Report from the Fifth Biennial World Summit of Brain Tumour Patient Advocates in Vienna
n Neuro-Oncology Advances launches lay summaries
n New brain tumour support groups in Uganda and Ghana
n A caregiver remembers her father
n TRACE – a new international infrastructure for rare cancer research
n GLIORESOLVE: training the next generation of brain tumour researchers
n Cancer-sniffing canines
Inside: the International Patient Advocacy Symposium on Brain Metastases report
Delegates from around the world at the Fifth Biennial World Summit of Brain Tumour Patient Advocates. See story inside.
umour International Awareness Week 2025 Tumour
International Brain Tumour Awareness Week 2025
The 2025 International Brain Tumour Awareness Week will take place from Saturday, 25th October to Saturday, 1st November
The annual International Brain Tumour Awareness Week is your chance to highlight the challenges of brain tumours in your own country. We encourage you to organise an activity which will contribute to increased awareness about brain tumours. For example, it could be a walk, a picnic, an information seminar, a scientific conference, a coffee morning, the distribution of a media statement or whatever you think will help to publicise the brain tumour cause and highlight the need for a special response and an increased research effort.
Please register/report your Awareness Week activity by completing this form: https://theibta.org/sign-up-for-an-event/#awareness
For more information please visit www.theibta.org or contact kathy@theibta.org
n Generating evidence for the treatment of rare cancer patients by Winette van der Graaf and Denis Lacombe
n GLIORESOLVE: an EU-funded Doctoral Network training the next generation of brain tumour researchers by Alice O’Farrell and Annette Byrne
n Report of the International Patient Advocacy Symposium on Brain Metastases by Jacqueline Partarrieu
n Congratulations to the Ghana Brain Tumor Foundation on its official launch by Dzidzo Dei-Tutu and Teddy Totimeh
n Glioblastoma care across the United States –a survey by OurBrainBank reveals gross disparities in care by Jacob Ellen and David
n Cancer-sniffing canines can detect malignancies by Karyn Schmidt, Jean Arzbaecher and Mary Ellen Maher 76
n Space-themed annual Art Festival of the Brain Tumour Foundation of India –an ‘out of this world’ experience by Tejpal Gupta 85
n Translators needed for The Brain Tumour Patients’ Charter of Rights ……86
n Beyond the diagnosis: research, volunteering and treatments for brain tumours –insights from Glioblastoma.it by Roberto Pugliese 87
n The 2024 Walk4Brains Rotterdam by Linda Poelman 88
n Focused ultrasound therapy for brain tumours by Dana Hutton and Kismet Hossain-Ibrahim
n Report of the 5th Biennial World Summit of Brain Tumour Patient Advocates by Jacqueline Partarrieu 94
n Actor and comedian Miles Jupp is centre stage for his one-man show “On I Bang”
n Corri al Massimo per Irene 2024 by Patrizio Fausti 122
n Patient advocacy track added to ASNO for the first time by Sarah Rigby and Melissa Lim 123
n Brain tumour patient and caregiver advocacy, support, fundraising and information organisations and initiatives
Published by
The International Brain Tumour Alliance (IBTA)
Editorial Kathy Oliver (Editor-in-Chief)
Magazine Design
Edwina Kelly Design (edwina@edwinakellydesign co uk)
Printed by Warners Midlands Plc, Bourne, Lincolnshire, UK www warners co uk
Copy
With warm thanks to all our contributors, interviewees and colleagues in the international brain tumour community Brain Tumour is published by the International Brain Tumour Alliance (IBTA), a not-for-profit, limited liability company incorporated in England and Wales, company registration number 6031485
The International Brain Tumour Alliance (IBTA) has made every effort to be accurate regarding the information contained in this magazine The IBTA accepts no liability for any inaccuracies or omissions herein nor can it accept liability for any loss or damage resulting from any inaccuracy in this information or third party information The information contained in this magazine is for educational purposes only The material in this magazine is in no way intended to replace professional medical care, advice, diagnosis or treatment from a doctor, specialist or healthcare professional For medical help and advice please consult your doctor Company sponsorship of the IBTA mentioned in this magazine does not necessarily imply the IBTA’s endorsement of any particular form or forms of therapy, devices, medical regimens, plans or behaviour referred to, promoted, manufactured or distributed by those companies The views expressed in this magazine are not necessarily those of the International Brain Tumour Alliance It is not the intention to print any matter that discriminates on the grounds of race, sex, sexuality, belief or disability The IBTA takes no responsibility for the content of third party websites mentioned in this magazine With regard to any advertisements in this magazine (the spaces for all of which have been offered by the IBTA to companies and organisations gratis), the IBTA has included these advertisements in the magazine in good faith and on the basis that they have been cleared for acceptable content in a consumer magazine through the relevant company’s and organisation’s appropriate legal channels The IBTA accepts no liability for or responsibility for the information/content appearing in such advertisements in this magazine The IBTA welcomes the ABPI (Association of the British Pharmaceutical Industry) Code of Practice (effective in the UK), the CHF/MA (Consumer Health Forum/ Medicines Australia) Working Together Guide and Manual (effective in Australia), the EFPIA (European Federation of Pharmaceutical Industries and Associations) Code of Practice on Relationships Between the Pharmaceutical Industry and Patients’ Organisations and the Healthcare Industry, and other relevant national and international industry-patient guidelines, and endeavours to work within their recommendations Items in the magazine (except those with original copyright) may be reproduced for the benefit of patients and caregivers as long as appropriate credit is given to the IBTA Please contact us for information on reproducing articles in this publication For further information on the IBTA’s sponsorship and transparency policy, please see www theibta org Funding organisations which support the IBTA’s work have no influence over the editorial content, preparation, design or production of this publication
VARIATIONS IN SPELLING
Spelling in this publication varies according to countryspecific practices and is thus variable throughout the magazine. For example, the word ‘tumor’ is spelled as “tumor’ in the United States but “tumour” in the United Kingdom and Australia. Sometimes the term “neuro oncology” is expressed without a hyphen and at other times with a hyphen as in “neuro-oncology”. To preserve the international nature of this publication, the IBTA has varied the spelling accordingly.
Dear Friends,
As we go to press with this edition of Brain Tumour magazine, we are at the end of 2024 It’s a time to think about the approaching New Year and a new chance of opportunities and, very importantly, renewed hope
In seeking to define “hope”, Dr Jerome Groopman (author, physician and scientist) wrote in his book The Anatomy of Hope: “Although there is no uniform definition of hope, I found one that seemed to capture what my patients had taught me Hope is the elevating feeling we experience when we see – in the mind’s eye – a path to a better future Hope acknowledges the significant obstacles and deep pitfalls along that path… hope gives us the courage to confront our circumstances and the capacity to surmount them ”
In the pages of this magazine, there are examples of the “significant obstacles and deep pitfalls” of a brain tumour journey which can lead to fear, loneliness and devastating loss
But there are other examples here of hopefulness
We were very excited this year to learn about the launch of two new patient advocacy organisations in Sub-Saharan Africa: Sethsmile in Uganda and the Ghana Brain Tumor Foundation, both of which are featured in these pages In this edition of the IBTA magazine you will read about hopeful innovative advances in research and technology to treat brain tumours You will learn about the ability to access plain language/lay summaries in the journal Neuro-Oncology Advances which publishes valuable insights into the world of brain and spine tumour research
You will read about training the next generation of brain tumour researchers and about a groundbreaking symposium on brain metastases held in Vienna in 2023 There is a fascinating article about cancer detection dogs There are excerpts from the report of the "2023 IBTA World Summit of Brain Tumour Patient Advocates" and many other stories about how the patient advocacy community is meaningfully engaging with other stakeholders involved in research, treatment and care
So, there is a lot to be hopeful about United we must stand as a community of determined and dedicated individuals coming together in the common cause of significantly improving outcomes for people with brain tumours and bringing hope to those who are on the brain tumour journey
With best wishes,
Kathy Oliver Chair, International Brain Tumour Alliance (IBTA)
We wish to thank the following for their support of the IBTA’s projects in 2024
Meet the IBTA team
Kathy Oliver is the IBTA’s founding Co-Director and its Chair. She is based in Tadworth, Surrey, UK.
Gordon Oliver is a Co-Director of the IBTA and lives in Tadworth, Surrey, UK.
Chris Tse is an IBTA Senior Advisor. He lives in Wellington, New Zealand.
Sally Payne is an IBTA Senior Advisor based in Sydney, Australia.
Fraser Legge is the IBTA’s financial administrator and is based in Edinburgh, UK.
Jenny Baker is an IBTA Senior Advisor and lives in Amersham, UK.
Stu Farrimond is the IBTA’s Digital Technology Advisor. He lives in Trowbridge, Wiltshire, UK.
Mary Ellen Maher, RN, MSN, APN, CNRN, is an IBTA Senior Advisor and lives in Chicago, USA.
Rosie Cashman, MA, MSc(A), NP(A), is an IBTA Senior Advisor. She lives in Vancouver, Canada.
Carol Kruchko, CBTRUS, is an IBTA Senior Advisor and lives near Chicago, USA.
Sharon Lamb is an IBTA Senior Advisor and lives in San Francisco, USA.
Mary Lovely, PhD, RN, CNRN, an IBTA Senior Advisor, lives in San Francisco, USA.
Edwina Kelly is a freelance graphic designer based near Bath / Bristol, UK.
Jean Arzbaecher, RN, APN, is an IBTA Senior Advisor and lives in Chicago, USA.
Anita Granero is an IBTA Senior Advisor for pediatrics and lives in France and Italy.
Christine Mungoshi, Zimbabwe Brain Tumour Association, is the IBTA Senior Advisor for subSaharan Africa
Around the World with the IBTA
The IBTA has subscribers around the world to whom it makes available its free annual magazine, Brain Tumour We print between 10,000 and 11,000 copies of Brain Tumour magazine each year and send them for free to recipients in these countries We also publish the magazine digitally on www issuu com
There is no other magazine like Brain Tumour which reaches deep into the international brain tumour community and covers stories from patients, family members, healthcare specialists, researchers, scientists, professional societies and others
Brain Tumour magazine has readers in the following countries:
Afghanistan n Albania n Algeria n Argentina n Armenia n Australia n Austria n Bangladesh n Belarus n Belgium n Bolivia
Bosnia-Herzegovina n Brazil n Bulgaria n Cameroon n Canada n Chile n China n Colombia n Congo n Croatia n Cuba n Cyprus
Czech Republic n Denmark n Dominican Republic n Egypt n El Salvador n Eritrea n Estonia n Ethiopia n Finland n France n Georgia Germany n Ghana n Greece n Guatemala n Hong Kong n Hungary n Iceland n India n Indonesia n Iran n Iraq n Ireland n Israel
Italy n Jamaica n Japan n Jordan n Kenya n Kyrgyzstan n Lebanon n Libya n Lithuania n Luxembourg n Macedonia n Madagascar
Malawi n Malaysia n Malta n Mauritania n Mauritius n Mexico n Mongolia n Morocco n Myanmar n Namibia n Nepal n New Zealand
Nigeria n Norway n Oman n Pakistan n Panama n Paraguay n Peru n Philippines n Poland n Portugal Qatar n Romania n Russia n Saudi Arabia n Senegal n Serbia n Singapore n Slovak Republic n Slovenia n South Africa n South Korea n Spain Sri Lanka n Sudan n Sweden n Switzerland n Syria n Taiwan n Tanzania n Thailand n The Netherlands n Trinidad and Tobago
Tunisia n Turkey n Uganda n Ukraine n United Arab Emirates n United Kingdom n United States n Uruguay Uzbekistan n Venezuela Vietnam n Yemen n Zimbabwe
Past editions of Brain Tumour magazine are available online here: https://issuu.com/ibta-org
Neuro-Oncology Advances: lay summaries now available enabling everyone to access and understand scientific research findings
Neuro-Oncology Advances (NOA) is a scientific journal that focuses on publishing the latest research on brain and spine tumors The articles published in NOA are freely available to anyone to read There are no fees or subscriptions needed for readers!
We are excited to announce that we have recently introduced “lay summaries” of scientific articles in the journal These summaries are written by the editors of the journal in a format that allows everyone to access and understand scientific research findings
The lay summaries were started by the Editor-in-Chief (Gelareh Zadeh) and Communication Editor (Farshad Nassiri) with support from Managing Editor (Elizabeth Martinson) and the journal’s
publisher (Phil Bishop with Oxford University Press) The lay summaries help ensure that important discoveries have a broad reach to the public, advocacy groups, and anyone interested in learning about brain and spinal tumors
The launch of lay summaries has also provided the opportunity for training and mentorship of junior researchers Dr Farshad Nassiri, as the Communication Editor for NOA, works closely with young trainees and members of the brain tumor community to prepare the content of the lay summaries
The lay summaries are located just below the abstract of selected original research articles (Clinical Investigations and Basic and Translational Investigations) and will be included for all original articles moving forward You can also find the lay summaries highlighted on our social media pages
Whether you're a patient, caregiver, researcher, or simply interested in learning more, Neuro-Oncology Advances provides valuable insights into the world of brain and spine tumor research n
To read the latest articles and their lay summaries please visit https://academic.oup.com /noa/issue/
Sethsmile - Our story
John Ssebaale
Sethsmile, Kampala, Uganda
Overview
In Uganda, 75% of the 3000 children who develop cancer die annually without getting proper medical care The majority of children with brain tumours go untreated, and most child brain tumours are detected through “visible diagnosis” when it’s too late There is a high rate of treatment abandonment/ loss to follow-up (34 2%) among children managed for brain tumours resulting in treatment failure, relapse and low survival rates These are a result of:
n delayed referral to specialist health facilities
n costly and inaccessible cancer treatment;
n high travel costs for patients from rural areas;
Seth at age six
n misconceptions and false beliefs that childhood cancers are caused by witchcraft; n a general lack of awareness among healthcare workers and parents resulting in either no diagnosis, misdiagnosis or late diagnosis
About Sethsmile
Sethsmile was founded in 2022 following the death of Seth in 2021, a six-year-old, generous, cheerful and friendly boy He was the last born among four children: Cynthia, Rodney and Jonez But Seth’s life took a dramatic turn when he was diagnosed with a brain tumour in October 2019 Seth underwent three major brain surgeries,
but we had only 24 hours with him after his third surgery and he passed away on Christmas day 2021
Despite his challenges, Seth’s spirit remained unbroken He never focused on his own hardships but sought to help others His signature phrase was “For real!” and he often flashed out his two victory fingers even on his sick bed as attestation that he would fight on
The family though shattered by the loss became determined to advocate for raising awareness about brain tumours among children, offering psychosocial support to children suffering from cancer and their families; supporting families from less
John Ssebaale, co-founder of Sethsmile, Kampala, Uganda and father to the late Seth Luwemba
privileged backgrounds to cover medical expenses through Sethsmile a charity set up in Seth’s memory
Our Mission at Sethsmile
To empower families and communities to stay ahead of child cancer through prevention, early detection and treatment
Our Vision
A world where child cancer is preventable, detectable and treatable for all
Our goal
We seek to reduce treatment abandonment and improve quality of life through robust psychosocial intervention and awareness strategies for children with brain tumours in Uganda by promoting early diagnosis, appropriate treatment, and continuous care
Our objectives at Sethsmile
n Reduce treatment abandonment rate
n Implement a robust system of wellcoordinated doctor – patient/caregiver relationships
n Facilitate collaboration and shared learning with all key stakeholders and partners
n Advocate for an even distribution of qualified oncological, pediatric, surgical, and other healthcare workers across health facilities, particularly at the primary care level
How we work
n We cover all out-of-pocket treatmentrelated costs for families such as transportation costs to and from the hospital
n We provide affordable accommodation for patients who travel from afar for treatment
n We negotiate with medical service providers for subsidies for children on brain tumour treatment
n We run rigorous community awareness campaigns
n We use technology to support case management - for example SMS alerts, mobile apps, etc
n We develop and produce easy-to-use resource material for caregivers including nutritional needs of patients, Do-It-Yourself physiotherapy exercises and information packs for caregivers
n We offer home visits to patients especially in hard-to-reach areas n
For further information, please visit us at www.sethsmile.org
To contact us, please email us at info@sethsmile.org
Seth with his mum, Rhoda
Seth’s mum, Rhoda (a co-founder of Sethsmile), engaging with a playroom session
At Sethsmile, during the International Brain Tumour Awareness Week (Saturday 26th October to Saturday 2nd Nov 2024), we had a number of activities geared toward raising awareness in Ugandan communities. We had a radio talk show, ran four daily radio spot adverts for the week focusing on signs and symptoms of brain tumours, spoke to children and teachers at three primary schools, in addition to a community engagement at a local church in the eastern part of Uganda. n
Right: Sethsmile was given airtime on a Ugandan radio talk show to spread awareness of the challenges of brain tumours. Sethsmile also ran four daily radio spot advertisements during the International Brain Tumour Awareness Week.
Far right: Mountain hike to raise support for children with brain tumours
Inaugural Chief Executive of Brain Tumour Support NZ Sarah Verran on her new role with the charity
IBTA: Sarah, congratulations on your new appointment as Brain Tumour Support NZ’s inaugural Chief Executive, and welcome to the international brain tumour community. Where in New Zealand did you grow up?
Sarah Verran (SV): I grew up in New Zealand’s North Island But I spent many years living in the United Kingdom, travelling and making the most of my overseas experiences I now live with my family in Cambridge, NZ, which is about 24 kilometres southeast of Hamilton
IBTA: What was your previous role before coming to Brain Tumour Support NZ?
SV: I spent the last few years working in the marketing, fundraising and project management space for other not-forprofits So I have a good understanding of the amazing satisfaction of seeing a project or initiative that provides support being implemented and I also understand the challenges of funding and maintaining a sustainable organisation Previous to that, my 15 years as a media director set the framework for the marketing and profile-building skills that I developed
IBTA: What led you to become involved in the field of brain tumours?
SV: I experienced a change of life perspective after my daughter, Ruby, was diagnosed with a craniopharyngioma brain tumour in 2015 I then moved from working in the commercial media space and into the world of for-purpose organizations Craniopharyngioma tumours are rare in New Zealand and we were suddenly thrust into a long haul world of surgeries, treatments, radiation, ongoing health and medication complications and realization of what our "new normal" world would look like
It was an incredibly intense and emotional time, and it's shaped our whole family’s daily lives
Ruby now needs 24/7 support after a post-surgery stroke left her with a traumatic brain injury So I learned very quickly how to advocate for her to have an inclusive life
I saw firsthand the challenges people have in how to access support services I saw the fragmentation of these support services and the inequities that many families face in advocating for their loved ones
Brain Tumour Support New Zealand provides much-needed support to so many families in similar situations to that in which we found ourselves, I wish that BTSNZ had been around when we were going through our journey
IBTA: As its inaugural Chief Executive, what are your key responsibilities at Brain Tumour Support NZ?
SV: It's a privilege to work in the Chief Executive role at Brain Tumour Support NZ and I know that building a sustainable organization through raising awareness, creating diversity of funding, promoting best practice and providing a high standard of care for brain tumour patients and their families are all a key focus for me in my new role I also want to ensure that every hospital in New Zealand knows who we are, and I also want to develop a network of research providers and resources that will support us in finding ways to improve outcomes for people affected by brain tumours
IBTA: What experiences and learnings from previous work positions are you bringing to your role at Brain Tumour Support NZ?
SV: I’m in the fortunate position to have experience of sitting on governance boards that support people with health conditions and disabilities I bring the lived experience from the grassroots level and the consumer perspective I know I can use my governance skills to help shape better outcomes for our communities I also have immense ➤
Sarah Verran, Brain Tumour Support NZ’s first Chief Executive
Sarah and her family, after her daughter Ruby completed her radiation treatment for a craniopharyngioma, a rare type of non-cancerous brain tumour
empathy for the communities that Brain Tumour Support NZ helps I like to think I'm a glass half-full person who believes in empowering patients and families through communication and engagement within a service so that people feel listened to and comfortable I'm a pretty high-energy person who likes to get on with “doing the do”
IBTA: What are some of the challenges facing your organisation?
SV: Like many not-for-profits, our services at Brain Tumour Support NZ rely on donations and grant funding We are not funded in any way by the government, so we are always trying to meet many
needs with the resources we have BTSNZ has an amazing community of supporters and people who champion our organisation In the short time I have been with the charity, the passion and commitment in the brain tumour community has blown me away It's very humbling The biggest challenges for patients in New Zealand are the barriers to equitable access to medications, treatments and wider support Lack of access to these things creates unnecessary stress for patients and their families at an already-overwhelming time We need to constantly think about how we can improve these challenging aspects at BTSNZ
IBTA: What role do you see Brain Tumour Support NZ playing in the coming years?
SV: I see BTSNZ playing a larger part in the research and advocacy fields and continuing to push for better access to treatments that enable the best possible outcomes and quality of life I’d like to see BTSNZ develop a richer wraparound service so that we meet the diverse needs of the people we support I’d also like to see increased education and knowledge-building about brain tumours for the wider community so, for example, children with this diagnosis are better supported in schools I’d also like to see greater awareness of brain tumours in the workplace And, of course, we mustn’t forget the caregivers, an often-neglected community
Importantly, I would like to spread awareness of the wonderful support offered by Brain Tumour Support NZ so that our services are known about before they are needed
IBTA: Finally, Sarah, how do you relax? Do you have a favourite pastime, holiday spot, hobby or sport?
SV: Apart from supporting Ruby and my other teenage children with their various activities, I’m what I like to describe as an “active relaxer” I enjoy cycle trail riding and spending time in my happy place - the garden There is something quite literally grounding and peaceful about getting your hands in the soil and creating a space for things to grow n
Sarah Verran participating in the Dunstan Trail ride on New Zealand’s South Island
EUROPEAN ASSOCIATION OF NEURO-ONCOLOGY
E A NO 202 5 PRAGUE
Prague Congress Center • Prague, Czech Republic
WWW.EANO.EU
The Norwegian Brain Tumour Association
The Association was established in 2009 and is an independent, national organisation for people who have or have had brain tumours, their families and other interested parties.
Please see www.hjernesvulst.no
If you are interested to sign in as a member or learn more about us, please contact us at post@hjernesvulst.no
My Father, Jan-Geert
Jolijn Boer
Deutsches Innovationsbündnis Krebs & Gehirn and Gemeinsam Gegen Glioblastom, Germany
Jolijn Boer is a pharmacist/clinical trial manager in a cancer research association in Germany. Here, in a moving tribute to her late father, Jan-Geert, Jolijn pays tribute to his warmth of character, his interests in life and his sense of humour. She describes the changes which a glioblastoma diagnosis brought to her father and indeed her whole family.
In February 2022, at the age of 54, my father was diagnosed with glioblastoma - after about twelve weeks of increased fatigue and two weeks of headaches
When I think of my healthy father, I see a man sitting on our worn-out sofa on a Sunday morning, a newspaper and a cup of coffee next to him, smiling to himself - either because something funny has
crossed his mind or because he simply enjoys the peace and quiet
When I think of my healthy father, I picture an automotive engineer with a true passion for vintage and classic cars, a man who disassembles, repairs, cleans, and reassembles nearly every single part of his 1973 Jensen, without ever taking a single photo
When I think of my healthy father, I see a rather tall Dutchman, a little bit overweight, with a quick and dry sense of humor He rarely talks about himself and has no apparent weakness - except for Haribo candy and old cars
When I think of my sick father, I see a man who is now a little heavier, with chubby cheeks, who finds it strange when
February 6th, 2008: Jolijn and her father Jan-Geert
people ask how he’s doing and always answers with a loud "Sehr gut!" (“Very good!”) followed by "Und wie geht es Ihnen?" ("And how are you?") I picture a man who still insists on going to the office in a suit every day, even though the doctors believe he's no longer capable of handling complex thoughts - and yet, no one has the heart to tell him to stay home I see a man who is hardly able to walk and calls our energetic terrier "a dawdler"
When I think of my sick father, I see a man with a lost look in his eyes I hear a man explaining to the family doctor that a bruise caused by a fall from his wheelchair is actually a bullet wound inflicted by an old neighbor I think of a man watching Tom and Jerry cartoons, not able to follow the plot
When I think of my sick father, I see him in a hospital bed placed by the window When asked if he’s in pain, he gives a small shake of his head I hear him make a contented sound whenever my family lies next to him When I think of my sick father, I
remember a lot of things that go wrong from a medical point of view
His treatment does not start in a brain cancer specialist center Joining a clinical trial immediately after surgery is not suggested, so this opportunity is missed A tumor sample for pathology is lost somewhere along the way, so precious time is also lost Drug interactions are overlooked Necessary medications are not prescribed The medication plan is filled out incorrectly I get the feeling as though something crucial is being missed or overlooked One local oncologist gives only curt responses to questions, probably discouraged by the prognosis of the illness
Yet, I also remember this as a time when many people and organizations help us, showing skill and dedication to ease my father’s journey and ours: my mother’s, my three siblings’, and mine Our family doctor, who is always there without delay; the oncologist in the neighboring town, who takes time to talk with my father about old cars; the palliative care team,
involved proactively from an early stage; the insurance company, which swiftly approves many necessary aids; the Together Against Glioblastoma campaign, whose chairperson advises us patiently and sensitively at every step, whose experts keep us well informed
April 28th, 2018. Jan-Geert with his Jensen.
March 12th, 2023: Jan-Geert
with articles and videos, and whose community allays some of our fears
Because of my sick father, I realize how invaluable such a supportive community is, how essential research on brain tumors remains, and how much more needs to be done to significantly improve the treatment and care of brain tumor patients I realize how necessary organizations like Together Against Glioblastoma and the German Innovation Alliance for Cancer & Brain are and how much can be achieved with the strength, will, and courage of the community
When I think of my father, I feel a strength close by, always with me, watching me even now as I write, kindly commenting on my thoughts, always looking out for memy Papa I know, somehow, somewhere, I will see him again n
Gemeinsam Gegen Glioblastom (Together Against Glioblastoma)
n German awareness initiative supporting glioblastoma patients and their families
n Goal: to help patients navigate the challenges of their diagnosis and make the experience less overwhelming and isolating
n Offerings: regular live and online events, including lectures, Q&A sessions, and experience sharing
n Serves as an information hub with verified resources on glioblastoma
•Features personal stories of patients and caregivers in short videos
n Partnered with the International Brain Tumor Alliance (IBTA) to translate and present The Brain Tumor Patient’s Charter of Rights in German
n Contact: gemeinsamgegenglioblastom org / Instagram via @gemeinsamgegenglioblastom
Deutsches Innovationsbündnis Krebs & Gehirn (The German Innovation Alliance for Cancer & Brain)this association only started working in 2023, thus it is not mentioned in the article above
n German association uniting all brain cancer stakeholders, including doctors, researchers, study groups, industry representatives, self-help groups, patients, caregivers, and public figures
n Goal: to complement the work of existing professional societies and self-help groups by promoting public discussion, increasing patient involvement, and advancing scientific education as well as supporting research, digitization, and artificial intelligence in brain cancer care
n Contact: Instagram via @krebsundgehirn
January 1st, 2019: Jan-Geert and Jolijn enjoying a day on the slopes
EDUCATION. COLLABORATION. CARING.
An independent group committed to therapeutic progress to serve patient needs
Founded to serve health, Servier is a global pharmaceutical group governed by a non‑profit Foundation that aspires to have a meaningful social impact, both for patients and for a sustainable world.
To address the incidence of cancer, we have made oncology a priority focus for development.
We aim to put patients and innovation at the heart of our actions. In this regard, we are now placed 3rd in the ranking for patient organizations working with us in oncology in the 2023 PatientView Report. We support IBTA and their valuable contributions to engaging in advocacy, raising awareness, and sharing information about brain tumours.
servier.com
On Instagram, please tag your rainbows with @ilfondodigio #rainbows4research
ilfondodigio.it
Gio’s Fund for research on brain tumors
As long as we continue to nourish research on the brain tumors of our children, we nourish hope Among projects supported: clinical studies for the treatment of diffuse intrinsic pontine glioma (DIPG); molecular stratification of high grade glioma in children.
IL FONDO DI GIO ONLUS
BRAIN CANCER STEP BY STEP
In our personalised support, in our friendly community, in our research work –at brainstrust we put people with brain tumours and their loved ones first.
Head for the Cure operates in over 25 cities, hosting 5K Run/Walks to fund critical research, develop new treatment options, and support essential programs for brain tumor patients and caregivers! Sponsor opportunities available!
Ambassadors supporting patients & caregivers 25+ 5K Run/Walks nationwide and dozens of community fundraisers Brains for the CureOnline Resource
Registered charitable trust – brainstrust is a registered charity in England and Wales (1114634), and Scotland (SC044642). Before I’m a patient. I’m a person.
Call our 24/7 support line on 01983 292 405 email hello@brainstrust.org.uk or visit brainstrust.org.uk
of all ages
Now in our second decade of existence, SSBTR has already raised over 2.4 million dollars to fund brain tumor research. Our unique 501(c)(3) non profit organization is built on a foundation of dedicated young people and community support.
Generating evidence for the treatment of rare cancer patients
Winette van der Graaf, President, and Denis Lacombe, Chief Executive Officer European Organisation for Research and Treatment of Cancer (EORTC)
Generating evidence for the treatment of rare cancer patients
There is a global consensus that therapeutic innovation and progress for rare cancers is not as efficient as for frequent tumors Revisiting the fundamentals of clinical research for rare cancers is long overdue The reasons are multifold but access to patients and their biological materials as well as the lack of a dedicated efficient clinical research infrastructure which would serve as a patient oriented rare cancer therapeutic accelerator have been identified as major missing parts of our ecosystems
It was also identified that bringing solutions to reality for rare cancer patients would require agile set-ups facilitating methodological innovation and new approaches to data science
Building on their successful ARCAGEN programme, the European Organisation for Research and Treatment of Cancer (EORTC) and EURACAN, the European Reference Network (ERN) dedicated to adult rare solid cancers have decided to embrace these challenges
ARCAGEN lays the groundwork ARCAGEN aimed to assess the prevalence of genomic alterations, high tumor mutational burden (TMB) and microsatellite
instability (MSI), as well as actionability in patients diagnosed with advanced rare cancers (defined with an incidence <6/105/y) Within 3 5 years, 991 patients were enrolled within 14 countries in Europe; 918 were evaluable, receiving a molecular profile (92 60% success rate), with a median turn-around time of 13 25 days [range 11 5-17] Molecular profiling was preferentially performed on Formalin fixed paraffin embedded (FFPE) material (FoundationOne, 73 5%)
If this was not feasible, liquid biopsy was used as a rescue (FoundationOne Liquid, 26 5%) Altogether, 456 patients (46%) received a therapy recommendation based on the molecular analysis: 63 (6 8%) patients for an already approved
treatment (ESMO Scale for Clinical Actionability of molecular Targets – ESCAT, 1A); 232 (25 3%) for an off-label use of an approved treatment in another indication with similar molecular alteration (ESCAT IC, II or III); and 161 (175%) for a clinical trial Pragmatic solutions to bring therapeutic progress for rare cancer patients need to embed a continuum from research to care and conversely, so that clinically-open questions can be subject to robust readouts EORTC and EURACAN have identified these missing solutions for therapeutic improvement at a time when molecular targets and treatment possibilities are more than ever flourishing while rare cancer patients continue to be deprived of impactful new therapeutic options ➤
Co-Chairs of the EORTC Task Force on rare cancers: Prof. Winette van der Graaf, EORTC President (left) and Dr Denis Lacombe, EORTC Chief Executive (right)
The above challenges have been matched to the learnings and solutions experienced during the conduct of ARCAGEN It resulted in creating TRACE, Tracking and treating Rare Cancers, RAre Entities and AYA Cancer Patients in the EU
What is TRACE?
TRACE is an international infrastructure combining a prospective registry to access rare cancer patients efficiently while offering access to clinical research programmes Therefore, it offers solutions for observational research such as addressing the natural history of rare cancer patients (longitudinal follow-up) and stimulating hypothesis generation for new therapeutic directions It provides solutions to rapidly conduct interventional and non-interventional clinical trials, preferably randomized, allowing rapid bench marking of therapeutic interventions
The cross talks / integrative solutions between the registry and the clinical trial solutions ensure rapid feasibility and recruitment access through a limited number of highly specialised centres who manage rare cancer patients as well as high quality / versatile access to genomic solutions / panel upon needs with turnaround time inferior at four weeks and
capability to run highly reliable synthetic / control arms TRACE also plans for translational research as well as HRQoL and Service Utility research across rare entities
In addition, TRACE aims at developing operational solutions to provide quality control solutions for clinical, biological and imaging data, support data sharing exercises, facilitating data science and
methodological research, and serving as a preferred partnership platform to cooperate across stakeholders such as but not limited to the commercial sector, regulators and HTA / payers among others
Last but not least, TRACE has been developed with and for patients and will be implemented as of 2025, while taking into account patients’ needs, recommendations and priorities n
The Brain Tumour Patients’ Charter of Rights
The Charter was launched in 2020 and is currently supported by over 90 organisations around the world
Please let us know if you would like to come on board as a supporting organisation by contacting kathy@theibta org
The Brain Tumour Patients’ Charter of Rights is intended to address brain tumour inequalities across countries It is also meant to simulate debate and discussion We hope that the Charter goals are shared by us all, whether we are brain tumour patients, caregivers, advocates, healthcare professionals or policymakers
The Charter is designed to be relevant across the globe and to this end, we at the IBTA have also started a programme of translating it into as many languages as possible This will maximise the impact of the Charter and help broaden accessibility to it
To date, the Charter has been translated from the English version into 15 languages: Catalan, Czech, Chinese (Traditional), Chinese (Simplified), Danish, French, German, Greek,
Italian, Japanese, Polish, Portuguese, Spanish, Swedish and Urdu Norwegian and Hindi are in the translation pipeline
To further maximise dissemination and use of the Charter around the world, we warmly welcome volunteers to translate the Charter document into additional languages not yet covered
Guidelines for translators can be downloaded from the IBTA website at www theibta org
If you are interested in helping us translate the Charter, please contact kathy@theibta org The Charter can be found on the IBTA website here: https:// theibta org/charter/ We’d love to hear from you! n
TRACE: an integral muti-tumour database for access to clinical trials for rare cancer patients
GLIORESOLVE:
An EU-funded Doctoral Network training the next generation of brain tumour researchers
Dr Alice O’Farrell, Programme Manager and Prof Annette Byrne, Project Coordinator Royal College of Surgeons in Ireland
We are excited to introduce readers to this multi-national, multi-discipline and multi-sectoral project, bringing together leaders in the neuro-oncology field and focused on brain tumour research.
GLIORESOLVE is an EU-funded Marie Sklodowska Curie Doctoral Network Award coordinated by Prof Annette Byrne at the Royal College of Surgeons in Ireland (RCSI) It is a major research study that aims to train a new cohort of ten brain cancer researchers with a specific focus on improving treatment outcomes in glioblastoma, which is the most frequent and aggressive type of adult primary brain tumour
GLIORESOLVE commenced in September 2022 and directly builds on research undertaken in the successful ‘GLIOTRAIN’ project, which ran from 2017 – 2021
The project has been granted funding of almost €2 7 million from the EU's Horizon Europe Research and Innovation Framework Programme
The Research Project
Glioblastoma is the most frequent and aggressive type of adult primary brain tumour New treatment options, including effective ‘precision’ medicine therapies, are urgently required
Glioblastoma belongs to a group of invasive brain tumours derived from glial cells Usually, glial cells surround, support
The GLIORESOLVE consortium
L-R: Dr Todd Burton (Mimetas BV); Mr Dennis Agardy (Universitaet Heidelberg); Dr Anna Golebiewska (Luxembourg Institute of Health); Dr Martine Lamfers (Erasmus MC); Mr Aleksandr Kalmykov (Doctoral Candidate – GeneXplain GbmH); Dr Karla Queiroz (Mimetas BV); Ms Promise Emeh (Doctoral Candidate –Mimetas BV); Mr Kevin Jimenez-Cowell (Doctoral Candidate – Erasmus MC); Prof Annette Byrne (RCSI); Ms Marta
de Lucas Sanz (Doctoral Candidate –Luxembourg Institute of Health); Prof Ahmed Idbaih (Paris Brain Institute ICM); Dr Oliver Politz (Bayer AG); Ms Clara Tejido Dierssen (Doctoral Candidate – Universitaet Heidelberg); Dr Alice O'Farrell (RCSI); Prof Frederik De Smet (KU Leuven); Dr Maïté Verreault (Paris Brain Institute ICM); Prof Jochen Prehn (RCSI); Mr Krish Gopalan (Doctoral Candidate – VIB) and Mr Mohannad Dabbour (Doctoral Candidate – RCSI).
and insulate the ‘neurons’ which are the cells that send signals throughout the brain A glioblastoma diagnosis carries with it a poor prognosis (poor average survival rates) even with aggressive treatment (surgical resection and radiochemotherapy with temozolomide [TMZ]) Despite significant efforts over many decades, clinicians remain unable to offer patients with glioblastoma a curative therapy A key cause of treatment failure relates to the development of resistance to standard treatment It is now known that resistance of glioblastoma to current treatments is related to the assortment of diverse cell types that surround and mix in with the tumour cells This amalgamation of cells in which the tumour lives is called the ‘tumour micro-environment’ (TME) TME information:
• The TME includes many different types of cells such as blood vessels and immune cells;
• The TME is different between patients and between different regions of one tumour, even in the same patient;
• The behaviour of the TME determines response to treatments;
• The TME is responsible for the tumour becoming resistant to chemo/radiotherapy
During the GLIORESOLVE predecessor project, GLIOTRAIN, we identified three glioblastoma tumour ‘subtypes’ based on the diversity of cells present in the TME Different types of genetic mutations were also found in each subtype Finally, we saw that particular characteristics of each subtype are potentially targetable by different drugs Treating different groups of patients based on the characteristics of their tumours is known as ‘precision medicine’
The overarching objective for the GLIORESOLVE project is to establish new ‘precision’ therapeutic strategies for glioblastoma patients by specifically considering how each TME subtype might be treated differently
The PhD research projects within GLIORESOLVE are grouped into two major work packages, ‘GlioImmune’ (six projects) and ‘GlioDiscover’ (four projects) The students whose projects are in ‘GlioImmune’ seek to identify and refine TME subtype-specific immunotherapy treatment approaches Projects include
GLIORESOLVE PhD students with Erasmus MC Principle Investigators, Dr Lamfers and Prof Leenstra and training contributors, Dr Jasper Rip and Dr Stefan Neys (post-doctoral researchers at Erasmus MC), Kathy Oliver (Chair and a Founding Co-Director of the International Brain Tumour Alliance [IBTA]) and Klaske Hofstee (Chairman of the Board, STOPhersentumoren.nl, The Netherlands)
studying oncolytic virus treatment and immune checkpoint inhibitors in the context of the tumour TME Moreover, a number of students are working to improve laboratory models of glioblastoma, which means that drug testing is more clinically relevant Finally, students are evaluating patterns of response and resistance using clinical, preclinical and in silico (computergenerated) data
The ‘GlioDiscover’ students seek to discover and interrogate new, nonimmune, TME-targeting therapies using advanced preclinical models Projects also use computer modelling (using computers to act as a model of a tumour) to investigate genetic networks that regulate the response or resistance to particular drugs Multi-‘omics analysis (including studying genetic mutations and the under- or over-expression of specific genes) of tumours representing each TME subtype are also being used to determine mechanisms and biomarkers of resistance
Overall, the GLIORESOLVE project seeks to:
1 Extend immunotherapy options to glioblastoma patients;
2 Identify other novel TME subtypespecific therapeutic targets;
3 Develop and optimise state of the art
laboratory models that mimic glioblastoma TME subtypes;
4 Test rationally selected (available) drugs / drug combinations in our models
PhD Student Training
GLIORESOLVE establishes a European biomedical research training programme of excellence Ten new PhD students are being trained across the fields of tumour biology, multi-omics, drug development, preclinical and clinical research, ex-vivo ‘tumour-ona-chip’ assay development, computational modelling and systems biology
There is a current need in academia and the private sector for researchers who have been trained in an environment that spans different research areas (often scientists only receive training in one very small niche) and who can navigate confidently between clinical, academic and private sector environments to progress applied research findings towards improved patient outcomes
Each researcher within the GLIORESOLVE project is registered on a PhD programme, undertaking their own research project under the supervision of experienced Principal Investigators In addition, students take part in the GLIORESOLVE networkwide training programme The training programme was designed to give students exposure to different research disciplines
and also to both academic and industry environments Training events include scientific training (multi-omics, translational research), transferable skills training (project management, prioritisation, Open Science, communicating your research etc ), training in equality & diversity, entrepreneurship and innovation
Coordinator Prof Byrne said: “New treatment options for glioblastoma patients and effective precision medicine therapies are urgently required Within GLIORESOLVE ten individual research projects will focus on identifying new drugs that might work in the different TME subtypes of glioblastoma, identifying new TMEfocused drug targets and making tumours more sensitive to immune therapies
Together the consortium will establish a new precision medicine platform, which we hope will establish novel treatment options Importantly GLIORESOLVE will train ten new PhD researchers who will represent a new generation of specialised brain cancer research scientists ”
The consortium
The GLIORESOLVE network brings together leading European and international academics, clinicians, private sector and not-for-profit partners including collaborators in Ireland (Coordinating institute - RCSI); France (Paris Brain Institute ICM, Carthera, Sorbonne Université); The Netherlands (Erasmus MC, Mimetas BV); Luxembourg (Luxembourg Institute of Health, Laboratoire National de Santé, University of Luxembourg); Belgium (VIB, KU Leuven); Germany (Medical Faculty Mannheim, Ruprecht-KarlsUniversitaet Heidlberg, GeneXplain GmbH, Miltenyi Biotec BV & CO KG, SB Science Management, Goethe University Frankfurt); Spain (Arjuna Therapeutics); the UK (International Brain Tumour Alliance - IBTA); Norway (Oslo University Hospital) and the USA (Brigham and Women’s Hospital) The project will also work closely with Brain Tumour Ireland and the National Centre of Neurosurgery, Beaumont Hospital, Dublin We are also delighted to welcome
To receive your free copy of Brain Tumour magazine, please visit: https:// theibta.org/our-publications/#e-News
The IBTA also publishes a monthly e-News containing information of interest to our international brain tumour community such as treatment advances, cutting edge research, patient organisation news, industry news relevant to brain tumours and a listing of forthcoming conferences and meetings.
Please visit: https://theibta.org/ourpublications/#e-News to subscribe.
Kathy Oliver from the International Brain Tumour Alliance (IBTA) to our External Advisory Board We will be working closely with the IBTA over the coming years and will be sharing news, events and updates over the course of the project Moreover, we were delighted that Kathy was involved in our second networkwide training event that took place in February 2024 The training focussed on Dissemination and Communication During the day that the students spent with Kathy they had the opportunity to consider the “bigger picture” impact of their research and how GLIORESOLVE findings may ultimately affect and improve patient outcomes n
Funding
GLIORESOLVE is funded by the European Union's Horizon Europe research and innovation programme under the Marie Sklodowska-Curie Doctoral Networks grant agreement No 101073386 (GLIORESOLVE) Views and opinions expressed are those of the author(s) only and do not necessarily reflect those of the European Union or the Research Executive Agency (REA) Neither the European Union nor the REA can be held responsible for them
A FOUNDATION OF HOPESINCE 1995
SOUTHEASTERN BRAIN TUMOR FOUNDATION
Devoted to funding a cure for brain tumors and providing support and outreach to patients and their families.
The SBTF is a 501 (c)3 not-for-profit organization and a public charity based in Atlanta, GA, USA WWW.SBTF.ORG.
Since 2003, the Sontag Foundation has invested over $65 million dollars to support the scientific careers of young investigators pursuing high-risk projects at a critical stage in their research
Award Amount:
$750,000 over a five-year period
Disbursement: $150,000 per year
Scan the QR code to learn more about the award including application details, dates, and eligibility
Report of the International Patient Advocacy Symposium on Brain Metastases
Convening, learning and collaborating for improved outcomes and greater hope for people with metastatic brain tumours in collaboration and cooperation with
24th - 26th June 2023
THE INTERCONTINENTAL WIEN HOTEL, VIENNA, AUSTRIA
Report written by Jacqueline Partarrieu
Vienna, Austria – 24th to 26th June 2023
Acknowledgements and sponsors
The International Brain Tumour Alliance (IBTA) is grateful to the following companies for their support of the first International Patient Advocacy Symposium on Brain Metastases:
In addition…
We are very grateful for our collaboration with the American Brain Tumor Association (ABTA) regarding this Symposium whose cooperation and enthusiasm for this event was indispensable. Sincere thanks to Ralph DeVitto, Nicole Willmarth and Shaina Thompson for their steadfast support.
We are very appreciative of the wise advice, help and support provided by the IBTA’s Senior Advisors on this project: Jean Arzbaecher, Jenny Baker, Rosemary Cashman, Maureen Daniels, Stuart Farrimond, Anita Granero, Carol Kruchko, Sharon Lamb, Mary Lovely, Mary Ellen Maher, Christine Mungoshi, Sally Payne and Chris Tse.
We were delighted to welcome to this brain metastases Symposium representatives of leading patient advocacy, support and information organisations from the worlds of breast cancer, lung cancer, melanoma, kidney cancer and brain tumours. Thank you all so much for your presence at this Symposium (see the list of attendees at the end of this report)
We are also extremely fortunate to have engaged leading facilitator Kathy Redmond of Redmond Consulting who guided us through the Symposium with her lively moderating skills and experience. Thanks, Kathy!
A big thank-you to the oncology professionals, research specialists and medical society representatives who made time in their hectic work schedules to join us in Vienna: Tracy Batchelor, Manmeet Ahluwalia, Susan Chang, Matthias Preusser, Chas Haynes and Richard Price.
Thanks and appreciation go to Ms Christine Quah, Manager, Global Accounts, HelmsBriscoe for her invaluable help in finding and securing our Symposium venue at the InterContinental Wien Hotel.
Many thanks also to the InterContinental Wien Hotel’s Garry Loefgen (Head of Commercial in charge of Sales, Marketing, Revenue and Reservations) and Stefan Schmid (Group and Event Sales Executive) for their impeccable help and support with our accommodation and conference arrangements.
Warmest thanks to Edwina Kelly, our wonderful graphic designer for her help with this Symposium Report (edwina@edwinakellydesign.co.uk).
Special thanks to our report writer, Jackie Partarrieu. We’re delighted she could join us in Vienna.
We greatly appreciate the photographic skills of our Vienna-based photographer, Martin Hormandinger (https://www.mh-photography.at/).
Thank you very much, Martin!
Last but by no means least, heartfelt thanks for IBTA Co-Director Gordon Oliver’s unfailing support and patience over the months of planning that went into this year’s Symposium, starting back in the depths of the pandemic in 2020/2021.
The International Patient Advocacy Symposium on Brain Metastases, a project of the International Brain Tumour Alliance (IBTA) in collaboration with the American Brain Tumor Association (ABTA), was a wholly independent activity and was conceived, planned and carried out by the IBTA and the ABTA. For details of the IBTA’s sponsorship and transparency policies, please see www.theibta.org
INTERNATIONAL BRAIN TUMOUR ALLIANCE
with the cooperation and collaboration of the
2023 International Patient Advocacy Symposium on Brain Metastases
Convening, learning and collaborating for improved outcomes and greater hope for people with metastatic brain tumours.
The Intercontinental Wien Hotel, Vienna, Austria
Evening of Saturday 24th and full day on Sunday, 25th June 2023
With representation from: Society for Neuro-Oncology (SNO), Dana Farber/Harvard Cancer Centre/Brigham and Women’s Hospital, Medical University of Vienna, Miami Cancer Institute, European Cancer Organisation (ECO), ALK Positive UK, Central Brain Tumor Registry of the United States (CBTRUS), Europa Donna, Inspiration Family, GO2 for Lung Cancer, International Kidney Cancer Coalition (IKCC), Lung Cancer Europe (LuCE), LUNGevity Foundation, Melanoma Research Foundation (MRF), Metastatic Breast Cancer Alliance (MBCA)
The Programme
DAY 1 - SATURDAY, 24TH JUNE 2023
REGISTRATION AND WELCOME DINNER
13:00 to Arrival at the InterContinental Wien Hotel, Vienna and All participants 18:00 registration for participants attending the 2023 International Patient Advocacy Symposium on Brain Metastases
19:00 to WELCOME BUFFET DINNER in The Parlor Restaurant at the All participants 21:00 InterContinental Wien Hotel (Dress: smart casual)
DAY 2 - SUNDAY, 25TH JUNE 2023
PLEASE NOTE: All Symposium sessions today will take place in the hotel Ballroom (Ballsaal) Sections 5 and 6
SYMPOSIUM WELCOME
08:30 to Welcome and brief introductions of all participants
Kathy Oliver (International Brain Tumour Alliance/IBTA, UK), Ralph DeVitto (American Brain Tumor Association/ABTA, US), Kathy Redmond (Redmond Consulting, Switzerland)
Chair: Ralph DeVitto (American Brain 11:00 Presentations by patient advocacy groups to briefly Tumor Association/ABTA, US) (120 minutes) address some of these topics:
• What are organisations doing in the area of brain metastases?
• How involved are organisations in focussing on areas of importance to patients with brain metastases? Is this a new area of advocacy for them?
• Are organisations planning to increase their focus on brain metastases patients in the future?
• What would be necessary for organisations to be more involved (ie access to more/better statistics, sharing best practices, ready-made support material/resources)?
• What are the top three unmet needs of the brain metastases community?
09:00 to 09:25 (25 mins): Breast cancer brain metastases
Ellen Verschuur (Europa Donna, Italy) (10 minutes per speaker X 2 = 20 minutes plus 5 minutes
Medha Deoras Sutliff (Metastatic Breast for Q&A) Cancer Alliance/MBCA, US)
09:25 to 09:50 (25 mins): Lung cancer brain metastases
Marjo Forsblom (Lung Cancer Europe/LuCE, Finland) (10 minutes per speaker X 2 = 20 minutes plus 5 minutes Amy Moore (LUNGevity Foundation, US) for Q&A)
09:50 to 10:00 (15 mins): Melanoma brain metastases Amanda Sisco (Melanoma Research Foundation, US) (10 minutes per speaker X 1 = 10 minutes plus 5 minutes for Q&A)
10:00 to 10:15 (15 mins): Kidney cancer brain metastases
Berit (Birdie) Eberhardt (International Kidney (10 minutes per speaker X 1 = 10 minutes plus 5 minutes Cancer Coalition/IKCC, Germany) for Q&A)
10:15 to 11:00 (45 mins): Further group discussion and Ralph DeVitto (American Brain Tumor Association/ABTA, US) summary of the session Kathy Redmond (Redmond Consulting/Switzerland) All participants
11:00 to COFFEE/TEA/REFRESHMENT BREAK AND NETWORKING All participants 11.30 in the Ballroom (Ballsaal) Foyer (30 mins)
SYMPOSIUM SESSION 2 – PRESENTATIONS
11:30 to SETTING THE SCENE: Presentations by clinicians and 12:45 others on the current state of treatment for brain metastases in the US and Europe, including barriers to treatment (10 mins for each presentation followed by 5 mins for Q&A)
USA perspective
11:45 to 12:00: Clinical guidelines on brain metastases; disparities in care in community centres versus academic institutions in the US
12:00 to 12:15: ABTA survey results: cross-sectional survey Nicole Willmarth (American Brain Tumor Association of US patients, caregivers and physicians on the diagnosis /ABTA, US) and treatment of brain metastases [from any solid tumour]
European perspective Matthias Preusser (Medical University of Vienna, 12:15 to 12:30 Overview of the brain metastases situation Austria) in Europe in terms of current state of treatment, policy issues, barriers to treatment, etc
12:30 to 12:45: European Cancer Organisation’s results of Richard Price (European Cancer Organisation/ECO, a survey of healthcare professionals in Europe and the Belgium) United States on unmet needs of non-small cell lung cancer (NSCLC) patients with brain metastases
12:45 to GROUP PHOTOGRAPH
13:45 LUNCH in The Parlor Restaurant at the InterContinental (60 mins) Wien Hotel
13:45 to The landscape of brain metastases and the current Carol Kruchko (Central Brain Tumor Registry 14:05 challenge of tracking true incidence of the United States/CBTRUS, US)
14:05 to THE WORLD CAFÉ: “The World Café is an easy-to-use
Table moderators: 16;00 structured conversational process intended to facilitate open 1. Debra Montague (ALK Positive, UK) (115 mins) discussion, and link ideas within a larger group to access
2. Medha Deoras Sutliff (Metastatic Breast Cancer the “collective intelligence” or collective wisdom in the Alliance,/MBCA, US) room.” (Juanita Brown and David Isaacs, co-founders of 3. Amy Kampschroeder (GO2 for Lung Cancer, US) The World Café). 4. Mary Lovely (International. Brain Tumour Alliance/IBTA, UK)
All participants
16:00 to COFFEE/TEA/REFRESHMENT BREAK AND NETWORKING
16:30 to Working together to improve the treatment and care of All participants 17:45 people with brain metastases. Consensus on priority collaborative activities: what structures are needed to coordinate collaborative efforts to improve outcomes for people with brain metastases?
17:45 to SYMPOSIUM WRAP-UP/END
18:00
Kathy Oliver (International Brain Tumour Alliance/IBTA, UK)
Ralph DeVitto (American Brain Tumor Association (15 mins) /ABTA, US)
Nicole Willmarth (American Brain Tumor Association /ABTA, US)
EVENING AT LEISURE (own arrangements)
DAY 3 – MONDAY, 26TH JUNE 2023
09:00 DEPARTURES FROM VIENNA All participants OR
Join the IBTA World Summit of Brain Tumour Patient Advocates starting at 09:00 on Monday, 26th June. On the morning of Monday, 26th June, there will be two follow-up plenary presentations at the Summit on the findings of the International Patient Advocacy Symposium on Brain Metastases which took place on 25th June. There will also be networking opportunities for brain tumour patient advocates, and patient advocates from the breast, lung, melanoma and kidney cancer communities to get to know each other.
Report of the International Patient Advocacy Symposium on Brain Metastases, Vienna, Austria – 24th to 26th June 2023
Executive Summary
The first ever International Patient Advocacy Symposium on Brain Metastases took place on 25 June 2023 in Vienna, Austria.
The Symposium was an initial attempt to bring together patient advocacy leaders, eminent healthcare professionals and relevant medical societies from the worlds of breast cancer, lung cancer, brain tumours, kidney cancer and melanoma. Thirty-one participants from ten countries (Austria, Belgium, Finland, Germany, Mongolia, Switzerland, The Netherlands, Ukraine, United Kingdom, and United
States) gathered to focus on a substantial and growing area of unmet need: brain metastases.
The thought provoking and deliverable focused international Symposium organised by the International Brain Tumour Alliance (IBTA) with the collaboration of the American Brain Tumor Association (ABTA), aimed to find ways to advance research and improve outcomes and quality of life for brain metastases patients and their families and caregivers.
Together, participants tried to develop a new understanding of the challenges of brain metastases and discussed ways to improve the situation for people whose lives have been touched by metastatic cancer.
The one-day symposium included:
■ A keynote presentation on “The landscape of metastases and the current challenge of tracking true incidence”.
■ Presentations by patient advocacy experts representing a range of cancers that metastasise to the brain.
■ Presentations by healthcare professionals on the current treatments for brain metastases.
■ A World Café session.
Participants at the First International Patient Advocacy Symposium on Brain Metastases at the Intercontinental Hotel in Vienna, June 2023
The IBTA is grateful to its sponsors for their support
■ A roundtable session on recommendations, next steps, and deliverables.
At the end of the day, actionable steps were proposed to meet the needs of patients with brain metastases, and their caregivers.
Attendees of the International Patient Advocacy Symposium on Brain Metastases committed to continue working together to implement ideas and actions that will improve outcomes and quality of life for people with metastatic brain tumours.
Welcome and introduction to participants
Kathy Oliver, Chair of the International Brain Tumour Alliance (IBTA) welcomed participants and explained how, coming from the world of primary brain tumours (cancers starting in the brain) she realised that people with brain metastases (cancer starting somewhere else in the body and spreading to the brain) have unique challenges. Together with Ralph DeVitto, CEO of the American Brain Tumor Association (ABTA), IBTA decided to do something about these unmet needs.
Kathy Oliver and Ralph DeVitto invited Symposium participants to collaborate in shedding light on the scope of issues faced by people with brain metastases. They also encouraged the attendees to work together in building a consensus and action plan across disease areas.
A bagful of resources and experiences
The American Brain Tumour Association (ABTA) collaborated with the IBTA to make the symposium a reality. Pictured (left) Nicole Willmarth (Chief Mission Officer, ABTA) and (right) Ralph DeVitto (President and CEO, ABTA)
Kathy Oliver, IBTA Chair, welcomes participants from ten countries to the Symposium
Ralph DeVitto, ABTA Chief Executive Officer, encourages attendees to build a consensus
SESSION
1
Setting the scene: by patient advocacy groups
Organisations explained what they are doing around brain metastases and pointed out the top unmet needs of patients
Chair: Ralph DeVitto - CEO, American Brain Tumor Association (ABTA)
Top line message: there is a pressing need for a multidisciplinary approach, more clinical trials, more flexible inclusion criteria, and better screening
The European perspective on breast cancer patients with brain metastases
Ellen Verschuur (past president and current board member) described the activities of Europa Donna, a European coalition of 47 member organisations, all focused on breast cancer. Their goal is to ensure that all European women with breast cancer have access to accurate information, quality screening, diagnosis, and treatment. She emphasised the importance of advocating for better personalised treatment and early detection. Europa Donna engages in various efforts to achieve their goals, including providing information, educating advocates, participating in research programs, and promoting awareness for metastatic breast cancer. One example of their advocacy work was a joint letter calling on
policy makers to prioritise metastatic or advanced cancer services in the European Parliament’s special committee on the Europe’s Beating Cancer report and the European Commission’s Europe’s Beating Cancer Plan. Europa Donna also has a user-friendly website that offers informative content (including information on metastatic breast cancer), conferences, and advocacy perspectives on issues such as returning to work. The organisation also uses social media, publications, and campaigns to disseminate reliable information and support services at the European level.
The organisation conducts surveys to gather feedback from breast cancer patients and advocates, highlighting issues such as the lack of data, patients’ need for social and economic support, and the limited access to innovative treatments.
Europa Donna also organises webinars on various topics related to breast cancer, including research, communication, exercise during treatment, and the financial impact of the disease. They emphasise the importance of an open communication approach and aim to improve local and national services based on the data and feedback they receive.
The organisation actively participates in research, particularly focusing on understanding the metabolic aberrations and challenges related to brain metastases. They advocate for a multidisciplinary approach, expertise in healthcare, and support systems that connect patients, families, caregivers, and professionals. Ultimately, their goal is to improve the lives of breast cancer patients by adding life to their days, not just days to their life.
Overall, Europa Donna is dedicated to ensuring that all European women with breast cancer receive the necessary support, information, and treatment options, and the organisation works tirelessly to advocate for better care and outcomes.
Ellen Verschuur explains Europa Donna’s advocacy efforts
The American perspective on breast cancer patients with brain metastases
Medha Deoras Sutliff from the Metastatic Breast Cancer Alliance
Medha Deoras Sutliff from the Metastatic Breast Cancer Alliance (MBCA, US) presented the initiatives and efforts of her organisation, as well as the importance of addressing brain metastases in breast cancer patients.
The Metastatic Breast Cancer Alliance is a unique coalition in the United States that brings together patient advocates, non-profit organisations, and the pharmaceutical industry to improve the quality and quantity of life for those living with metastatic breast cancer. They have four strategic goals:
1. Research
2. Making clinical trials more patient centric
3. Equitable access to standard of care
4. Integrating quality of life.
Medha Deoras Sutliff highlighted the significance of brain metastases in breast cancer patients, with approximately 10 to 15% of individuals with metastatic breast cancer developing brain metastases and 20 to 25% of triple negative breast cancer patients developing brain metastases. She mentioned one of their coalition partners, Living Beyond Breast Cancer, which is a trusted resource for breast cancer information in the US and provides specific programmes and support for patients diagnosed with brain metastases.
The Marina Kaplan Project, named after a patient advocate who passed away from brain metastases, aims to ensure clinical trial design with less restrictive eligibility criteria. The project also focuses on increasing the quality of basic science research, expanding the number of clinical trials, and incorporating trial endpoints that measure quality of life and survival. The project includes a working group consisting of patient advocates, industry representatives, and non-profit representatives. Together they engage in various activities such as educational sessions, meeting with clinical trial
investigators and sponsors, and encouraging pharma advisory group participation by patient advocates.
Medha Deoras Sutliff introduced the MBCBrainMets.org website, which was created in 2022 by patient advocates in collaboration with a scientific and medical advisory committee. The website was conceived as a one-stop hub with cutting-edge information and community support. As well as patient stories, it has a clinical trials search tool specifically for breast cancer patients with brain metastases to enable access to innovative treatments. The goal of the site is to provide direction, clarity, and support tailored to patients’ needs.
Moving forward, the MBCA aims to continue participating in conferences, adding content to the MBCBrainMets.org website, and hosting webinars to share knowledge and best practices among different cancer organisations.
Medha Deoras Sutliff emphasised the importance of addressing unmet needs, such as:
■ including patients with progressing brain metastases in clinical trials (not just those with stable metastases)
■ advancing imaging tools for identifying tumour necrosis vs tumour progression
■ greater focus on brain metastases and leptomeningeal disease in trials and drug development
■ increased screening for brain metastases in breast cancer patients.
She concluded with a call to action, highlighting the progress made in extending and improving the lives of metastatic breast cancer patients. She urged more people to advocate for these patient populations and emphasised that there is hope for individuals living with brain metastases from breast cancer, with many experiencing extended survival.
Deora
describes the progress made in extending the lives of metastatic patients
Medha
Sutliff
Lung cancer patients with brain metastases
Top line message: more research, funding, and awareness are urgently needed
The European perspective of lung cancer patients with brain metastases
Marjo Forsblom from LuCE (Lung Cancer Europe) acknowledges that lung cancer initiatives are not as advanced as those in breast cancer, despite lung cancer metastasising to the brain more frequently. LuCE aims to be a voice for all Europeans with lung cancer by collaborating with members and stakeholders. Twentythree countries are represented in their efforts. They focus on advocating to de-stigmatise the disease and on empowering their members to have a say in their respective countries. While LuCE hasn’t specifically addressed brain metastases, their members do provide information and guidance on medical options for brain metastases. The organisation conducts annual surveys and publishes reports on lung cancer, including quality of life and care challenges. However, brain metastases haven’t been specifically addressed in these reports, and Forsblom suggested adding questions on this topic in future surveys.
LuCE aims to raise awareness and share information about brain metastases in the future by developing educational materials such as leaflets and videos. They have various channels to disseminate
information, including education and capacity-building programmes. Marjo emphasised the importance of understanding the challenges faced by patients and caregivers and the need for access to upto-date medical information and expertise. She also highlighted the lack of data on brain metastases from lung cancers, and the importance of cooperation and sharing knowledge with other organisations.
The unmet needs expressed by lung cancer patients include:
■ early detection and diagnosis
■ advocating for MRI scans and screenings for all lung cancer patients
■ improved treatment options and access across Europe
■ addressing reimbursement issues for brain scans in certain countries
■ focusing on supportive care, quality of life, and end-of-life discussions.
Marjo Forsblom acknowledged that there is much work to be done to address the unmet needs of lung cancer patients, including those with brain metastases.
Marjo Forsblom (Lung Cancer Europe – LuCE) describes the unmet needs of lung cancer patients
The IBTA and ABTA were very saddened to hear that Marjo Forsblom passed away on Sunday, 22nd October 2023. The lung cancer organisation she represented at the Vienna Symposium – Lung Cancer Europe (LuCE) – paid tribute to Marjo by saying: “Marjo was a beautiful shining light in our community… Marjo was a wonderful, inspiring, and committed advocate who made a huge impact in our community. Marjo’s strength and passion will continue to drive our work advocating for all those impacted by lung cancer as she had done with such dedication in her lifetime. Marjo lived life to the end and her eloquent commitment to lung cancer advocacy will be greatly missed by everyone in the LuCE family.”
Marjo Forsblom from Lung Cancer Europe (LuCE)
The American perspective of lung cancer patients with brain metastases
Amy Moore from the LUNGevity Foundation explains that lung cancer patients face the highest risk of developing brain metastases
Amy Moore, representing LUNGevity Foundation in the United States, said lung cancer remains a significant health concern worldwide. Among its various types, lung cancer patients face the highest incidence and risk of developing brain metastases, up to 25% of patients. Amy emphasised the urgent need to improve the lives of lung cancer patients with brain metastases through increased research, funding, and awareness.
Brain metastases significantly impact patients’ quality of life, she said, causing symptoms ranging from headaches to dizziness and fatigue. Unfortunately, treating brain metastases poses several challenges, including the lack of good preclinical models to understand the disease and difficulty in penetrating the blood-brain barrier for effective therapy. Patients with active brain metastases are often excluded from clinical trials, limiting access to potential lifesaving/life extending treatments.
A survey conducted by the ABTA and published in NeuroOncology Practice revealed that very few patients and caregivers believe the federal government in the United States is doing enough to address the unmet needs of brain metastases. Key priority areas identified for federal intervention include:
■ increased treatment and research funding
■ better insurance coverage
■ improved clinical trial inclusion criteria
■ faster drug and treatment approvals.
To address these issues, LUNGevity collaborates with patient advocates in creating a rolling document of unmet needs for the lung cancer community including leptomeningeal disease and determining when stereotactic radiosurgery (SRS) can be used instead of whole brain radiation therapy (WBRT).
Amy Moore concluded that it is essential to prioritise research into new treatments, provide ongoing financial and emotional
support for patients and caregivers, promote awareness that lung cancer metastasises to the brain, and educate doctors about brain metastases in lung cancer patients.
Brainstorming on brain metastases
Emilie Prazakova from Roche (one of the funders of the Symposium) studying the Symposium programme
Coming together to learn from each other – Amy Moore from LUNGevity (right) discusses a session with Amy Kampschroeder (left) of GO2 for Lung Cancer
Melanoma patients with brain metastases
Top line message: there is a pressing need for early detection, better access to treatments and greater awareness
Amanda Sisco from the Melanoma Research Foundation explains their research efforts and calls for increased funding
Amanda Sisco, representing the Melanoma Research Foundation (MRF), in the United States, highlighted the organisation’s mission to eradicate melanoma through medical research, education, and advocacy. Among the critical research areas, brain metastases have been a focus of MRF’s summits, collaborating with over 50 leading industry providers and researchers to guide future research. They have held three summits on melanoma brain/CNS metastases and have printed reports summarizing the learnings from 2015, 2018 and 2021.
Through various initiatives, MRF addresses the unmet needs of melanoma patients with brain metastases. The foundation funds investigators at all stages, supporting research on prevention, early detection, tumour cell dormancy, therapy, and resistance. Specific
topic proposals also include research on rare melanoma subtypes, such as mucosal and paediatric melanoma. Ocular and cutaneous melanoma have a larger propensity to metastasise to the brain thus more research is needed on those subtypes.
MRF emphasises patient education, producing materials on clinical trials and offering a clinical trial service with personalised assistance. They have also published research and hosted patient symposia, produced animated patient videos, and advocated for telehealth access to improve the patient experience and quality of life.
One of the key unmet needs identified is raising awareness that melanoma can spread to the brain. Despite the prevalence of brain metastases, there is still a lack of widespread knowledge among healthcare providers about this, which can hinder early detection and appropriate treatment.
MRF wants to continue collaborating with various organisations, such as the IBTA and ABTA, to work towards a future with improved melanoma research funding, increased access to telehealth, and greater awareness that melanoma can spread to the brain.
A packed programme with keynote presentations and roundtable discussions
Kidney cancer patients with brain metastases
Top line message: better screening, data, and treatment are key to improving outcomes
Berit (Birdie) Eberhardt from the International Kidney Cancer Coalition (IKCC) calls for better screening, data and treatments
Berit (Birdie) Eberhardt, representing International Kidney Cancer Coalition (IKCC), shared the organisation’s interest in brain metastases and highlighted the urgent need for improved care for kidney cancer patients with brain metastases. She shared a moving story of a patient on his honeymoon, diagnosed with brain metastases, who became a driving force behind her efforts to address brain metastases in kidney cancer. She recalls how IKCC’s focus on bone metastases revealed significant gaps in treatment options, prompting IKCC’s interest in addressing brain metastases, which impact 2-15% of patients and pose substantial challenges.
In Birdie’s experience, brain metastases are a sensitive topic for patients due to issues with access and choice of treatment. Patients are often recommended whole-brain radiation (that carries early and late side effects) and not offered other treatment choices. Many patients face delays and uncertainty while waiting for care, indicating the pressing need for better approaches to brain metastases.
The IKCC wanted to close the knowledge gap of challenges and unmet needs of kidney cancer patients with brain metastases. It was
decided that a multidisciplinary approach based on insights from neurosurgical, medical, and radiation oncologists could help address this knowledge gap.
To this end, a multinational team of researchers affiliated with the International Kidney Cancer Coalition examined the literature together to figure out what existing management strategies work best. Additionally, 36 experts from six countries and 26 institutions participated in a survey study, answering 60 questions related to dilemmas in the diagnosis, screening, surveillance, and treatment of kidney cancer-related brain metastases. The findings revealed valuable insights for screening, diagnosis, and treatment of brain metastases in kidney cancer patients.
The top unmet needs identified include screening and diagnosis, particularly in regions where access to MRIs is limited. GP and oncologist education is crucial to raise awareness and ensure patients receive appropriate screenings. The survey resulted in an interdisciplinary consensus of the management of brain metastases in patients with renal cell carcinoma published in the Cancer Journal for Clinicians. On the basis of a literature review and survey results, authors built algorithms for the management of brain metastases in patients with kidney cancer.
Experts recommended obtaining a routine brain MRI even if kidney cancer patients do not have neurological symptoms. Treatment options were suggested including surgery. Experts favoured avoiding whole-brain radiation and promoting different radiation methods for patients with brain metastases. Additionally, systemic treatment and support for patients dealing with brain metastases, including information, treatment, and symptom management, are vital aspects to address.
To improve care for kidney cancer patients with brain metastases, IKCC calls for better access to statistics and resources that can be adapted to different countries. Collaboration with local patient organisations and involving caregivers in the research and care process is also crucial.
Birdie Eberhardt voiced a call to action: the unmet needs of kidney cancer patients with brain metastases demand urgent attention and coordinated efforts from healthcare professionals, organisations, and policymakers. By increasing awareness, education, and access to advanced treatments, she said, we can enhance the care and quality of life for patients facing this challenging aspect of kidney cancer.
Driving rights for brain metastases patients
Top line message: driving status for brain metastases patients create significant challenges; a change in regulations is needed
Debra Montague, representing the ALK Positive Patient Group in the United Kingdom, campaigns against arbitrary driving restrictions affecting brain metastases patients
Debra Montague, chair of ALK Positive patient group represents a population of ALK+ lung cancer patients. This is a rare form of lung cancer that impacts many patients under the age of 50. Debra brought up the issue of driving rights for patients with brain metastases. Currently this presents a significant challenge and has raised concerns from both patient and physician perspectives.
In the UK, patients with brain metastases face a disqualification from driving for two years, a decision that has been questioned due to its arbitrary nature and lack of expert input. Advocacy efforts have been made to shorten this disqualification period, aiming for better quality of life for patients who rely on driving for their daily activities.
The situation is different in the US, where driving is considered a state privilege, and the rules vary from state to state. However, driving restrictions are more related to the presence of seizures rather than brain metastases per se. Surveys conducted among brain metastases patients in the UK revealed that none of them experienced seizures, challenging the reasoning behind the driving disqualification.
The impact of driving restrictions on patients and their families is significant. Patients, particularly those with non-small cell lung cancer (NSCLC), are often young adults who need to transport children and themselves for various activities and work. Lack of access to public transport in certain areas further exacerbates
the issue, leading to social isolation and decreased quality of life. Patients fear becoming a burden for their caregivers.
Efforts to engage with organisations responsible for driving regulations, such as the Driver and Vehicle Licensing Agency (DVLA) in the UK, have been challenging but have resulted in some progress. The UK guidance on driving with brain metastases has been reduced from a two-year disqualification to twelve months. However, this decision lacks evidence, and there remains a need to advocate for more reasonable restrictions based on individual cases and medical evidence.
Stigma around brain conditions remains prevalent, adding to the burden for patients with brain metastases. Lack of understanding and knowledge from both the medical community and employers can result in patients feeling like a burden, impacting their confidence and independence.
To address the challenges, Debra Montague suggests that several actions can be taken:
1. Collaboration and education: encourage collaboration between medical professionals, legal experts, and patient organisations to create guidelines and educate physicians about driving restrictions and individual cases in patients presenting with brain metastases.
2. Occupational therapy: promote access to occupational therapy, physical therapy, and speech therapy to address quality of life issues and help patients regain independence.
3. Legal advice: provide physicians with legal advice and support in making driving recommendations for patients, reducing concerns about potential legal consequences.
4. Surveys and research: conduct more surveys and research to gather evidence on driving safety among brain metastases patients, debunking misconceptions, and challenging arbitrary decisions.
5. Public awareness: raise public awareness about brain metastases and reduce stigma to ensure patients receive the support and understanding they need.
The challenges surrounding driving rights (and return to work) for brain metastases patients are complex, but concerted efforts from the medical community, policymakers, and patient advocates can lead to positive change and improved quality of life for those affected.
Group Discussion on other challenges and unmet needs of brain metastases patients: a multidisciplinary approach to treatment and support is urgently required
Brain metastases present significant challenges for patients (and caregivers), with a multitude of unmet needs that must be addressed to improve their quality of life and treatment outcomes.
During the discussions following Session 1 of the International Patient Advocacy Symposium on Brain Metastases, participants highlighted various issues faced by brain metastases patients, shedding light on the burden of symptoms and the lack of personalised care.
One major concern for brain metastases patients is the burden of symptoms associated with their condition. Symptoms can vary widely depending on the location and number of brain metastases, and they can significantly impact a patient’s ability to function independently. The fear of losing independence is a common struggle for these patients, and caregivers play a vital role in providing support and maintaining their loved ones’ quality of life.
Another significant challenge is the lack of consistency in treatment approaches. Physicians often face difficulties in deciding the best course of action. Guidelines and regulations can sometimes hinder their ability to make personalised treatment decisions. While guidelines can provide some level of standardisation, they may not always consider the individual circumstances of each patient.
A multidisciplinary approach involving various medical experts is essential to ensure patients receive the most effective and personalised treatment plan possible.
Furthermore, stigma remains an issue for patients with brain metastases. The condition is often misunderstood and hidden away, leading to additional emotional and psychological burdens
for patients and their families. Education and awareness campaigns aimed at both the public and employers are needed to combat stigmatisation and foster understanding and support for those affected by brain metastases.
The impact of brain metastases on driving rights (see previous page) is another pressing concern. Patients facing driving restrictions experience a loss of independence and isolation, particularly in locations with limited public transportation. Efforts to advocate for more reasonable driving restrictions based on individual cases and medical evidence are ongoing, aiming to improve patients’ quality of life.
Access to support services, such as occupational therapy, physical therapy, and speech therapy, is crucial to help patients cope with the challenges they face. These therapies can address the burden of symptoms, support patients’ independence, and improve their overall well-being and quality of life.
Additionally, it is essential to recognise that brain metastases patients are not solely burdened by the brain condition itself. Many patients also face the challenges of managing their systemic cancer and treatments, which can lead to fatigue and other symptoms that affect their daily lives.
Concluding Session 1, participants at the Symposium stressed that addressing the challenges and unmet needs of brain metastases patients requires a comprehensive and multidisciplinary approach. This involves providing personalised treatment plans, raising awareness about the condition and its impact, and offering support services that cater to the unique needs of each patient.
SESSION 2
Setting the scene: patient advocacy groups, clinicians and advocacy experts from the US and Europe give their perspectives of the current state of treatment for brain metastases in Europe and the United States
Current treatment and disparities in care for brain metastases patients: the US perspective
Dr Manmeet Ahluwalia, from the Miami Cancer Institute in Florida (US) provided valuable insights into the US perspective on brain metastases. He explained that brain metastases, affecting over 200,000 patients annually in the United States, pose a significant clinical problem. He further said that lung cancer is the most common cause of brain metastases (50%), followed by breast cancer (15%), melanoma (10%), and kidney cancer (10%). Twentyfive percent of lung cancer patients have brain metastases at initial presentation and 80% of lung cancer patients surviving over two years will develop brain metastases.
Advances in therapeutics for primary cancers have increased patient survival rates, leading to a rise in brain metastases
incidence. Furthermore, clinical trials now often include patients with brain metastases, potentially providing them with better treatment options.
US National Comprehensive Cancer Network (NCCN) guidelines recommend brain MRI screening for lung cancer patients at the time of diagnosis of their primary cancer, as they are more likely to have developed brain metastases by then, compared to breast cancer patients for example, where brain metastases usually occur later in the disease progression.
Median overall survival for patients with brain metastases was 8-12 months but this is changing with improved treatments. The introduction of targeted therapies has dramatically improved
Nicole Willmarth, American Brain Tumor Association (ABTA) Chief Mission Officer, sheds light on the unmet needs of brain metastases patients
Dr Manmeet Alhuwalia form the Miami Cancer Institute in the United States describes improved treatments for brain metastases patients
outcomes for lung cancer patients with genetic alterations like EGFR and ALK mutations. The response rates and duration of response for these patients have significantly increased with new-generation drugs, such as alectinib and lorlatinib, leading to better control of brain metastases.
Immunotherapy has also shown promise in treating brain metastases. Drugs like pembrolizumab have demonstrated comparable response rates in the brain and the rest of the body. However, PDL1 expression (“programmed cell death ligand 1” – a protein that plays an important role in the body’s immune system) in the brain is lower, indicating that not all immunotherapies may be equally effective in the brain and other parts of the body.
Manmeet Ahluwalia explained that the use of combination strategies, incorporating targeted therapies and radiation, is critical for better patient outcomes. Neurological functions must also be closely monitored in patients undergoing combination therapies. New “designer drugs” could mean that, ultimately, brain radiation might be able to be skipped completely.
He further said that, as indicated in the ABTA survey published in Neuro-Oncology Practice, disparities in care exist between academic and community centres in the US. Academic centres generally offer better access to genomic testing, multidisciplinary management, advanced technologies, neurocognitive testing, and clinical trials. Patients with complex cancers are encouraged to seek treatment at academic centres for comprehensive care.
Additionally, exciting advances in focused ultrasound, enabling non-invasive disruption of the blood-brain barrier, hold promise for targeted drug delivery to brain metastases.
Overall, the US perspective on brain metastases emphasises the importance of personalised treatment approaches, multidisciplinary care, and the continuous pursuit of novel therapies to improve patient outcomes and quality of life.
Understanding brain metastases: insights from the American Brain Tumor Association’s survey
Brain metastases pose significant challenges for cancer patients, caregivers, and physicians. The American Brain Tumor Association (ABTA) recently conducted a survey to shed light on the unmet
needs and experiences of those affected by brain metastases. Nicole Willmarth, Chief Mission Officer at ABTA, who presented the survey results, emphasised the opportunities to improve patient and physician understanding, and to find better treatments for these conditions.
The ABTA is dedicated to enhancing the understanding and treatment of brain tumours, including primary brain tumours and brain metastases. In 2018, the ABTA recognised the lack of awareness and limited treatment options for brain metastases patients, leading them to launch the Metastatic Brain Tumor Collaborative. The initiative aims to identify needs, raise awareness, and accelerate research in this area.
The collaborative launched a first-of-its-kind survey - the results of which were published in 2021 - of patients, caregivers and physicians on the diagnosis and treatment of brain metastases. The methodology involved an online quantitative survey conducted between 2018 and 2019. Three distinct groups were surveyed: cancer patients diagnosed with brain metastases, caregivers of brain metastases patients, and physicians treating such patients. The survey results highlighted some crucial gaps and discrepancies that were published in Neuro-Oncology Practice
One significant finding was a lack of effective communication between physicians and patients regarding brain metastases. While 77% of patients stated they knew little to nothing about brain metastases before their diagnosis, 77% of physicians claimed to
Dr Ahluwalia emphasises the importance of personalised treatment for brain metastases patients
Nicole Willmarth describes the need for better communication between physicians and patients
have discussed the risk of brain metastases within the first three visits after a primary cancer diagnosis. This disconnect presents an opportunity for better communication and timely education for both patients and healthcare professionals.
The survey also revealed consistent symptoms reported by patients and caregivers, with headaches, dizziness, and balance issues being the most prevalent. Rapid identification of these symptoms could lead to earlier diagnosis and intervention. Treatment decisions were another focal point in the survey. Patients and caregivers considered treatment success, quality of life, and potential side effects as the top factors influencing their choices. Physicians in academia primarily recommended stereotactic radiosurgery (SRS) for brain metastases treatment. However, community or private practice physicians tended to recommend whole brain radiation treatment more frequently, prompting the need for guidelines, educational initiatives, and access to the most effective treatments.
Clinical trials were also examined in the survey. Surprisingly, only 23% of physicians advocated for their brain metastases patients to engage in clinical trials. The ABTA aims for a higher rate of clinical trial participation and wishes to see more brain metastases patients considered for trials, even those people with active metastases.
Overall, the ABTA survey provided valuable insights into the challenges faced by brain metastases patients and their caregivers. The findings underscore the importance of improved communication between patients and physicians, early symptom recognition, and access to the most suitable treatments.
Overview of the brain metastases situation in Europe: current treatments, challenges, and opportunities
Professor Matthias Preusser, from the Medical University of Vienna, provided an overview of the European perspective on brain metastases treatment, policy issues, and barriers to treatment. Europe’s diversity makes it challenging to have an overarching perspective, but guidelines have been developed by organisations
like the European Association of Neuro-Oncology (EANO) and the European Society for Medical Oncology (ESMO), offering a good idea of what should be done. However, the application of these guidelines and research efforts still faces challenges.
Matthias Preusser said that one major challenge is therapeutic nihilism, where some healthcare providers may believe that brain metastases are untreatable, leading to limited options offered to patients.
Inequality in access to care is also evident, especially in Eastern European countries, where patients often lack adequate treatment options and may seek help elsewhere. Fragmentation of responsibility for payment and different medical specialties often lead to varying treatment approaches, hindering optimal cooperation.
Despite the challenges, there are opportunities for improvement. Advances in understanding the biology of brain metastases have shown that central nervous system (CNS) metastases can be treated with modern drugs and radiation therapies. Best practice examples of successful clinical trials for brain metastases are emerging, and community trial methodologies are evolving. Collaboration and lobbying efforts have led to increased interest from the pharmaceutical industry in supporting brain metastases research.
Matthias Preusser suggested that there is a real opportunity to defeat brain cancer together, and as part of that, we are witnessing an evolving clinical trial methodology. We need to reconsider eligibility criteria, how to measure responses, and other important factors. The pharmaceutical industry has not shown much interest in these trials, but there have been positive developments with
Nicole Willmarth advocates for a higher rate of brain metastases patient participation in clinical trials
Professor Matthias Preusser talks about inequality in access to cancer care across Europe
companies who now recognise the importance of clinical research regarding brain metastases.
There are study groups in Europe, such as the European Organisation for Research and Treatment of Cancer (EORTC). Currently, the EORTC is implementing a study group platform for brain metastases research at a European level, which is a promising sign.
Matthias Preusser said that clinicians have been lobbying for years to focus on drugs that are effective in treating brain metastases.
A significant achievement is the publication of a clinical trial, called TUXEDO-1 focused on treating patients with HER2-positive breast cancer and brain metastases with trastuzumab deruxtecan. The trial received great attention due to the specific enrolment of patients with active brain metastases. Investigators witnessed a positive response to the treatment, demonstrating that trials in this challenging population can be successful.
While accruing patients for certain cohorts can be challenging, research should aim for larger randomised trials to compare different treatments. Collaborative efforts, such as those at the EORTC, will play a crucial role in setting up these trials and driving progress.
Matthias Preusser said that the main challenge lies in the heterogeneity of the disease, the patients, and the physicians involved. Surgeons, radiotherapists, medical oncologists, and researchers have different approaches. Additionally, the regulatory landscape varies across European countries. The solution lies in collaboration to improve patient outcomes, educating both patients and physicians, and advocating for increased research efforts. Resilience also needs to be built to overcome the challenges and
make significant strides in this field.
Matthias Preusser emphasised the need to invest in understanding brain metastases on a biological level and conducting prospective clinical research with high-quality methodology. This includes enrolling patients with active forms of metastases in clinical trials to assess treatment efficacy.
In conclusion, he said, the heterogeneity of brain metastases and the various challenges posed by different countries and medical specialties require collaborative efforts to improve outcomes for patients.
Addressing Unmet Needs of NSCLC Patients with Brain Metastases: insights from the European Cancer Organisation (ECO) Survey
The European Cancer Organisation (ECO) conducted a survey to gain valuable insights into the unmet needs of non-small cell lung cancer (NSCLC) patients with brain metastases. Richard Price, Head of Policy at ECO, presented his organisation and shared the survey results. ECO focuses on collaboration and brings together 42 cancer organisations and 21 cancer patient organisations to improve outcomes through multidisciplinarity, collaboration and professionalism.
Among other resources, ECO has published the European Code of Cancer Practice, a patient-centred statement of the core requirements for good clinical cancer practice.6
The NSCLC survey, conducted in collaboration with Ipsos Mori, gathered responses from 350 healthcare professionals, including medical oncologists, clinical oncologists, radiation oncologists, and haemato-oncologists. It aimed to shed light on the challenges faced by patients with brain metastases and how healthcare professionals perceive their needs. The survey highlighted some key points:
■ Top symptoms: healthcare professionals reported common symptoms experienced by patients with brain metastases, such as headaches, brain swelling, memory loss, and speech difficulties.
Professor Preusser sees hope for brain metastases patients as successful clinical trials emerge and methodologies evolve
Richard Price from the European Cancer Organisation (ECO) sheds light on the challenges faced by patients with brain metastases
Price said patients, caregivers and
regarding the need for emotional support and information provision
These symptoms add to the burden already faced by patients alongside their lung cancer diagnosis.
■ Coordination of care: healthcare professionals recognised the challenges associated with coordinating care for these patients, with 73% identifying it as a significant issue. The complex care pathway often leaves patients feeling that they don’t receive enough time from healthcare professionals to address their needs adequately.
■ Need for information and support: providing quality and timely information and support to patients emerged as a significant problem according to the survey results. Patients and caregivers were looking for more comprehensive information to navigate their journey effectively. The timing for receiving relevant information does not seem to be currently adequate.
■ Emotional distress: emotional distress was a strong theme identified in the survey. Patients’ and caregivers’ emotional needs were not adequately addressed, leading to feelings of uncertainty and anxiety.
■ Discrepancies in perspectives: when comparing healthcare professionals’ perspectives with those of patients and caregivers, some differences surfaced, especially concerning emotional support and information provision. Patients felt that healthcare professionals may miss the mark on emotional support, and this aspect warrants further discussion.
To further understand the patient perspective, 12 NSCLC patients and their caregivers were interviewed, revealing alignment with the
survey results from healthcare professionals in most areas. However, patients emphasised the significance of emotional support and expressed the need for healthcare professionals to be attentive to emotional needs throughout the journey, not just during the initial diagnosis.
Patients with metastatic cancer experience sudden and complex symptoms, which can be overwhelming for them and their caregivers. The process of navigating through appointments and seeing various specialists adds to the burden they face. The role of nurses in delivering information and support was highlighted as pivotal.
Richard Price said that addressing the unmet needs of NSCLC patients with brain metastases requires concerted efforts and political attention. The survey results present an opportunity to influence policy reform, such as the current pharmaceutical legislation reform in Europe, which aims to incentivise addressing unmet medical needs.
In addition to policy changes, there is a call for measuring issues related to access to psychosocial care. ECO, said Richard Price, is actively involved in initiatives to bring attention to these issues and intends to involve national politicians to further the cause. Collaborative efforts are encouraged.
In conclusion, the survey conducted by ECO sheds light on the unmet needs of NSCLC patients with brain metastases, emphasising the importance of addressing emotional support and the timely provision of information. By engaging policymakers, healthcare professionals, patients, and caregivers, progress can be made to improve the quality of care and support for this vulnerable patient population.
Richard Price explains the European Code of Cancer Practice
Richard
healthcare professionals’ perspectives differ
The current challenge of tracking the true incidence of brain metastases SESSION 3
Carol Kruchko, founder, President, and Chief Mission Officer of the Central Brain Tumor Registry in the United States (CBTRUS) discussed the challenges of tracking and measuring the incidence of brain metastases in the US.
Brain metastases are secondary brain tumours that result from cancer cells spreading from other parts of the body. These tumours have a significant impact on patient morbidity and survival. However, obtaining accurate incidence estimates for brain metastases is difficult due to varying study methodologies and the lack of mandated population-based reporting of data on metastatic tumours in the US.
Carol Kruchko’s presentation covered the background of cancer registration in the United States, highlighting population-based cancer registries as the primary data source. She emphasised that brain metastases are not systematically collected, unlike primary cancers, which hinders the accurate tracking of their true incidence. CBTRUS plays a crucial role in providing primary brain and central nervous system tumour statistics for the entire US. It collects data from various sources, including The Surveillance, Epidemiology and End Results (SEER) programme of the National Cancer Institute in
the US and the Centers for Disease Control and Prevention’s (CDC) National Program of Cancer Registries. CBTRUS then publishes yearly reports and research papers based on this data. CBTRUS also works with the North American Association of Central Cancer Registries (NAACCR) that sets standards for registries in the US and Canada.
Carol Kruchko explained the difficulties in estimating the true incidence of brain metastases. Brain metastases can occur at any time after a primary cancer diagnosis, making it challenging to track and measure their frequency. The presentation showcased CBTRUS’s studies on synchronous brain metastases (detected within two months of the primary cancer diagnosis). These studies indicate that lung cancer has the highest frequency of synchronous brain metastases, followed by others such as breast and melanoma (skin cancer).
The presentation concluded by Carol Kruchko emphasising the need for collaborative efforts between the research community and cancer registries to develop standardised variables and practices for collecting data on metastatic brain tumours. The goal is to have accurate population-based data on all metastatic brain tumours to improve diagnosis, treatment, and outcomes for patients with brain metastases.
Overall, Carol Kruchko’s presentation highlighted the importance of addressing the challenges in tracking brain metastases’ true incidence and the potential impact on cancer-related research and patient care.
Carol Kruchko from the Central Brain Tumor Registry of the United States (CBTRUS) who presented about registries and brain tumor statistics in the US
Participants at the Vienna Symposium developed a new understanding of the challenges of gathering data on brain metastases
Report
Vienna, Austria – 24th to 26th June 2023
The World Café
Facilitated by Kathy Redmond (Redmond Consulting)
Finding consensus on priorities for collaborative projects to address challenges in brain metastases
The World Café method is “a simple, effective and flexible format for hosting large group dialogue. The process begins with the first of three or more twenty-minute rounds of conversation for small groups of four (five maximum) people seated around a table. At the end of the twenty minutes, each member of the group moves to a different new table.” Each table discusses a different topic, building on the comments of the previous group sitting at that table.
Attendees at the IBTA/ABTA brain metastases Symposium were split into groups along these lines to discuss the four main areas of challenges that were identified in that morning’s sessions. Each person visited three tables for 20 minutes at a time. Each table had a “table host” who remained at the table and moderated
discussions. It was also the “table host’s” role to brief new arrivals at their table about what happened in the previous round of discussions. The four topics for the World Café session covered brain metastases and:
1. Access (to treatment and care)
2. Patients and caregivers
3. Research
4. Diagnosis and treatment
Kathy Redmond of Redmond Consulting facilitated discussions on the main challenges faced by the brain metastases community
Four main areas of concern regarding brain metastases were identified at the World Café session
Challenge 1 - Access
Structured discussion allows consensus-building
Access to clinical trials for brain metastases patients and the availability of MRI imaging in certain countries emerged as key issues. Disparities in access and treatment between academic and non-academic centres were also highlighted.
After discussion, Symposium World Café participants proposed the following actions:
1. Influence regulators for increased and more flexible inclusion in clinical trials: Establish a working group comprising patients, payers, and physicians to advocate for the inclusion of brain metastases patients (stable or progressive) in clinical trials. Prepare a white paper backed by strong data to strengthen the argument.
2. Survey clinicians globally: collect data on the number of patients denied access to trials and identify the extent of exclusion across various clinical areas.
3. Templates for screening protocols: develop templates for brain metastases screening to aid in the setup of protocols, reducing the burden for clinicians.
4. Financial incentives: explore the possibility of developing a financial argument to encourage pharmaceutical companies to include brain metastases patients (stable or progressive) in their trials.
5. Reimbursement schemes: advocate for reimbursement schemes that incentivise referrals to centres of excellence, ensuring brain metastases patients receive the best care available.
Accessing collective wisdom on brain metastases
New friendships and lasting collaborations began at the Vienna Symposium
Challenge 2 - Patients and Caregivers
Amy Kampschroeder of GO2 for Lung Cancer in the United States leads a discussion on finding ways to improve the situation of brain metastases patients
World Café participants emphasised the need for educational materials and support for patients and caregivers. The lack of highquality information and literacy barriers were also highlighted.
After discussion, Symposium World Café participants proposed the following actions:
1. Develop educational materials: create educational materials addressing issues such as fear, lack of hope, and other areas of concern for brain metastases patients. Involve patient perspectives through focus groups.
2. Multimodal education: provide educational materials in various modalities, such as videos and written material in clear language, catering to different demographics and geographies.
3. Symptom checklist: create a symptom checklist for brain metastases to help patients identify warning signs.
4. List of resources: list of available support services (physiotherapy, transport, psychological support) for caregivers and patients, to ease their day-to-day lives and decrease stress.
5. Peer-to-peer connections: establish peer-to-peer networks to enable patients and caregivers to learn from each other and provide necessary support. Train volunteers to deal with difficult questions and to know where to find answers or how to signpost patients to relevant sources of information.
6. Establish patients’ rights code: develop an international code outlining the essential rights and requirements for brain metastases patients, similar to the European Code of Cancer Practice and The Brain Tumour Patients’ Charter of Rights
Amy Kampschroeder chairs a small group at the Symposium’s World Café session
Deciding on actionable ideas
Challenge 3 - Research
More funding, research, education, and awareness-building are essential
The lack of comprehensive data on brain metastases incidence, funding, the need for inclusive clinical trial designs, and dealing with stigma were key issues discussed at the research World Café table.
After discussion, Symposium World Café participants proposed the following actions:
1. Data collection: gather data to identify the size and scope of brain metastases issues, enabling policymakers and funding agencies to understand the urgency and needs.
2. Patient advocacy for funding: train patient advocates to petition for funding and set an agenda to support brain metastases research.
3. Collaboration and awareness: foster collaboration among different organisations and stakeholders worldwide to raise awareness and advocate for brain metastases research.
4. Mandate brain metastases data: require pharmaceutical companies to provide meaningful data on brain metastases for drugs seeking approval.
Challenge 4Prognosis and Treatment
World Café participants emphasised the lack of screening and timely diagnosis, communication gaps, and limited treatment options as the primary challenges in this area.
After discussion, Symposium World Café participants proposed the following actions:
1. Research and awareness: conduct prospective studies and raise funds for research to establish the benefits of early screening and increase awareness among patients and healthcare providers.
2. Improved communication: educate patients and physicians about brain metastases and the importance of screening during consultations between primary care providers and oncologists.
3. Screening process centralisation: develop a centralised screening process to reduce costs and improve accessibility.
Better data is required to identify the size and scope of brain metastases challenges
Conclusion from the World Café session
Addressing the challenges in brain metastases requires collaborative efforts between patients, caregivers, healthcare providers, regulators, and policymakers. To achieve progress, data collection is essential. Advocacy for more funding, research, education, and awareness-building are essential. Working together, we can improve access to clinical trials, enhance patient and caregiver support, drive research, and improve early diagnosis and treatment options for those affected by brain metastases.
SESSION 4
Roundtable discussion
Facilitator - Kathy Redmond (Redmond Consulting)
The roundtable discussion aimed to explore feasible, practical ideas and action points to address brain metastases collectively as an international consortium of patient advocacy organisations concerned about brain metastases.
Attendees discussed the importance of collaborative efforts in tackling challenges that individual organisations cannot address alone. Attendees also emphasised the need to prioritise and implement achievable ideas promptly to make a real impact.
More research on brain metastases’ incidence and inclusive clinical trials is needed
Kathy Redmond summarises consensus points and key actionable ideas
Key ideas and action points discussed
During the roundtable, several ideas and action points were proposed. Here are some of the prominent ones:
1. Mapping exercise and repository: participants agreed on creating a mapping exercise and repository to collect and share information related to brain metastases. This repository would be accessible to patient advocates, physicians, policy makers and industry, promoting multistakeholder collaboration.
2. Funding brain metastases research: ABTA volunteered to support and create a pool of funds for global brain metastases research. Other organisations were invited to join and contribute.
3. Guidelines: participants suggested developing clear guidelines for brain metastases screening (across all primary tumour sites) and collaborating with medical societies to ensure their implementation. The importance of collecting and understanding global brain metastases data was highlighted.
4. Evidence generation for guidelines: it was proposed to form a think tank or working group to identify study designs needed to generate evidence for the development of screening guidelines.
5. Survey on brain metastases needs: participants discussed conducting a survey across brain metastases groups from different primary sites, to understand the needs of patients, caregivers, and clinicians. This survey would provide valuable information and enable recommendations based on real-world intelligence.
6. Writing a position paper or white paper: this paper would state the unmet needs of brain metastases patients, to raise awareness and advocate for addressing the challenges and gaps in care.
7. Advocacy for mandated inclusion of a brain metastases arm in brain tumour clinical trials: participants emphasised advocating for the inclusion of brain metastases in clinical trials along with primary brain tumour trials and pushing regulators to mandate these inclusions. It was suggested to study the successful Paediatric Investigation Plan (PIP) structure in clinical trials.
8. Pharmaceutical companies and regulators: participants acknowledged the need to engage with pharmaceutical companies and regulators to ensure appropriate drug development, inclusion of patients with progressive brain metastases in clinical trials, and approvals for brain metastases treatments.
9. Social media campaign: a proposal for a social media campaign to raise awareness about brain metastases was suggested. This campaign would focus on educating patients; reducing the stigma and misinformation on brain metastases; empowering patients to ask health professionals questions and to request adequate screening and treatment. An example to follow could be the “Know your lemons” campaign for breast cancer awareness. The idea of paid campaigns on Google was also raised, to make sure evidence-based and relevant information appears when people use search terms such as “brain metastasis” or “brain metastases” online.
Mary Lovely, IBTA Senior Advisor, chairs a small group at the World Café
Kathy Oliver and Kathy Redmond celebrate the achievement of consensus at the Symposium
Next steps
After thorough discussions, the following next steps were proposed by Symposium participants:
1. Formation of an international Brain Metastases Collaborative: establish a global collaborative network to work together and implement the Symposium discussed ideas. This network could meet twice a year (virtually), with an in-person meeting depending on the availability and preferences of the participants. These meetings would allow the collaborative network to track progress, discuss further ideas, and celebrate achievements.
2. Initiate mapping exercise: start the mapping exercise and repository creation promptly to gather and share information on brain metastases resources. This was judged to be an attainable goal in the short term.
Conclusion
The first International Patient Advocacy Symposium on Brain Metastases served as an initial platform to collectively share ideas and agree on action points to address the challenges of brain metastases. It also served to create connections between people and organisations who contributed their energy and knowledge generously to make this first gathering a success. Symposium participants expressed commitment and enthusiasm to work together to make a real impact and improve the lives of patients and caregivers affected by brain metastases. The proposed international collaborative network aims to build momentum and ensure continued progress for patients with brain metastases and their communities.
The IBTA and ABTA thank all the Symposium attendees for their much-valued participation in this meeting on brain metastases*.
• Amanda Sisco, Melanoma Research Foundation, US
• Amy Kampschroeder, GO2 for Lung Cancer, US
• Amy Chastain Moore, LUNGevity Foundation, US
• Anna Uzlova, Inspiration Family, Ukraine
• Berit (Birdie) Eberhardt, International Kidney Cancer Coalition, Germany
• Batchimeg Batchuluun, Nomax Publishing and former caregiver, Mongolia
• Carol Kruchko, Central Brain Tumor Registry of the US
• Chas Haynes, Society for Neuro-Oncology, US
• Debra Montague, Alk Positive, UK
• Ellen Verschuur-van der Voort, Europa Donna, The Netherlands
• Emilie Prazakova, Roche, Switzerland
• Erik Ramos, Northwest Biotherapeutics, US
• Gordon Oliver, International Brain Tumour Alliance, UK
• Inna Kucherenko, International Brain Tumour Alliance, UK and Ukraine
• Inessa Matiuskenko, Inspiration Family, Ukraine
3. Recruitment of additional stakeholders: reach out to other organisations that were invited but couldn’t attend the Symposium meeting to include them in the collaborative efforts. This should be done, in any event, for any action steps taken forward from the Symposium.
4. Continued communication: set up a Facebook group or website (that could also serve as a landing page for the social media campaign) to facilitate ongoing communication among participants.
5. Resources page in the Symposium report: include a resources page with website addresses for various projects and initiatives related to brain metastases at the back of this Symposium meeting report.
• Jaimee Becker-Halprin, Novocure, US
• Jean Arzbaecher, University of Illinois, US, and International Brain Tumour Alliance, US
• Kathy Oliver, International Brain Tumour Alliance, UK
• Kathy Redmond, Redmond Consulting, Switzerland
• Lukas Artner, Bristol Myers Squibb, Austria
• Matthias Preusser, Medical University of Vienna, Austria
• Lena Geltenbort-Rost, Seagen, Switzerland
• Manmeet Ahluwalia, Miami Cancer Institute, US
• Marjo Forsblom, Lung Cancer Europe, Finland
• Mary Ellen Maher, Northwestern Medical Group, US, and International Brain Tumour Alliance, US
• Mary Lovely, International Brain Tumour Alliance, US
• Medha Deoras Sutliff, Metastatic Breast Cancer Alliance, US
• Nicole Willmarth, American Brain Tumor Association, US
• Ralph DeVitto, American Brain Tumor Association, US
• Richard Price, European Cancer Organisation, Belgium
• Roland Hackl, Bristol Myers Squibb, Austria
*Country denoted for Symposium participants is the country of origin of the participant
26th June 2023
Report of the International Patient Advocacy Symposium on Brain Metastases, Vienna, Austria – 24th to 26th June 2023
Resources
1.
WEBSITES
■ International Brain Tumour Alliance (IBTA): https://theibta.org
■ American Brain Tumor Association (ABTA): https://www.abta.org
■ Europa Donna: https://www.europadonna.org
■ Europa Donna resources on Metastatic Breast Cancer: https://www.europadonna.org/metastatic/
■ Europe’s Beating Cancer Plan Consultation: https://eurohealthobservatory.who.int/publications/m/europe-sfactual report from the targeted stakeholder consultation: beating-cancer-plan-consultation-factual-report-from-the-targetedstakeholder-consultation
■ European Organisation for Research and Treatment of Cancer (EORTC): https://www.eortc.org
■ EORTC Brain metastases research and emerging therapy conference - https://www.brain-mets.com 4 to 6 October 2023 in Paris:
■ Resource hub for breast cancer patients with brain metastasis: https://mbcbrainmets.org
■ Metastatic Breast Cancer Alliance: https://www.mbcalliance.org
■ European Association of Neuro-Oncology: https://www.eano.eu
■ The Dandelion Toolkit to explain cancer stages: https://dandeliontoolkit.com
■ Living Beyond Breast Cancer https://www.lbbc.org (breast cancer resources, real stories, and support):
■ The Marina Kaplan Project https://www.mbcalliance.org/projects/breast-cancer-brain(patient-led initiative that aims to accelerate urgently-needed research metastasis-initiative/ on breast cancer brain metastasis through increased funding and influencing key stakeholders):
■ Paediatric Investigation Plan (PIP): https://toolbox.eupati.eu/resources/paediatric-medicine-paediatricinvestigation-plan/ and https://www.ema.europa.eu/en/glossary/paediatricinvestigation-plan
■ Lung Cancer Europe (LUCE): https://www.lungcancereurope.eu
■ LUNGevity: https://www.lungevity.org
■ Melanoma Research Foundation (MRF): https://melanoma.org/research-science/
■ Mamma Mia Breast Cancer Magazine: https://mammamia-online.de/
■ Mon Reseau Cancer du Sein: https://www.monreseau-cancerdusein.com/
■ Cancer de Mama Metastático: https://www.cancermamametastasico.es/
■ Global Colon Cancer Association: https://www.globalcca.org/
■ GO2 for Lung Cancer: https://go2.org/
2. PUBLICATIONS
■ Melanoma central nervous system metastases: current approaches, challenges, and opportunities12 Sept 2016 - Pigment Cell and Melanoma Research: https://onlinelibrary.wiley.com/doi/full/10.1111/pcmr.12538
■ Melanoma central nervous system metastases: An update to approaches, challenges, and opportunitiesReview 1 Aug 2022 – Pigment Cell and Melanoma Research: https://onlinelibrary.wiley.com/doi/10.1111/pcmr.13059?af=R
■ Treatment options in brain metastases in kidney cancer (video): https://ikcc.org/infohubpost/treatment-options-in-brain-metastases-in-kidney-cancer/
■ Interdisciplinary consensus of the management of brain metastases in patients with renal cell carcinoma16 June 2022 – Cancer Journal for Clinicians: https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21729
■ ESMO Clinical Practice Guidelines: Supportive and Palliative Care: https://www.esmo.org/guidelines/guidelines-by-topic/supportive-and-palliative-care
■ ESMO Guide for Patients with Advanced Cancer: Getting the Most Out of Your Oncologist (in various languages): https://www.esmo.org/for-patients/getting-the-most-out-of-your-oncologist
■ Europe’s Beating Cancer Plan: https://health.ec.europa.eu/system/files/2022-02/eu_cancer-plan_en_0.pdf
■ ABTA’s cross-sectional survey of patients, caregivers and physicians on diagnosis and treatment of brain metastases: https://doi.org/10.1093/nop/npab042
■ The Brain Tumour Patients Charter of Rights, Kathy Oliver, Gordon Oliver, Barrie Littlefield, Kristina Knight, David Arons, Danielle Leach (drafting/editorial committee), https://theibta.org/wp-content/uploads/2022/01/BTPatientsCharterofRights-Updated-180122.pdf
3. CAMPAIGNS and VIDEOS
■ Know your lemons: https://www.knowyourlemons.org
■ “The Cancer Currency” campaign (Europa Donna): https://www.thecancercurrency.com
■ Lung cancer “Get checked campaign” (European Lung Foundation): https://www.getchecked.eu
■ Six warning signs of brain tumors (Cleveland Clinic): https://www.youtube.com/watch?v=2OfLiWLjaEY
■ Better safe that tumour (The Brain Tumour Charity): https://www.youtube.com/shorts/SabBOkL6rNY
■ Lung Cancer and Brain Mets: Jodi’s Story (American Lung Association): https://www.youtube.com/watch?v=5_mSvoIRisY
■ Choosing Treatment for Lung Cancer Brain Mets (American Lung Association): https://www.youtube.com/watch?v=DeXFxK2md5k
■ “Clear on cancer” (NHS campaigns): https://www.youtube.com/watch?v=0sH50SapSoU https://www.cancerresearchuk.org/health-professional/awareness-and-prevention/be-clear-on-cancer REFERENCES
1 Elshad Hasanov MD, PhD, Debra Nana Yeboa MD, Mathew D. Tucker MD et al, An interdisciplinary consensus on the management of brain metastases in patients with renal cell carcinoma June 2022 https://doi.org/10.3322/caac.21729
2 Albert E Kim et al, Cross-sectional survey of patients, caregivers, and physicians on diagnosis and treatment of brain metastases, NeuroOncology Practice, Volume 8, Issue 6, December 2021, Pages 662–673, https://doi.org/10.1093/nop/npab042
3 Le Rhun E, Guckenberger M, Smits et al. on behalf of the EANO Executive Board and ESMO Guidelines Committee, EANO–ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up of patients with brain metastasis from solid tumours†, Annals of Oncology (2021), doi:
4 Bartsch, R., Berghoff, A.S., Furtner, J. et al. Trastuzumab deruxtecan in HER2-positive breast cancer with brain metastases: a single-arm, phase 2 trial. Nat Med 28, 1840–1847 (2022). https://doi.org/10.1038/s41591-022-01935-8 https://www.nature.com/articles/s41591-022-01935-8 https://www.nature.com/articles/d41586-022-02131-x
5 See above
Mark Lawler, Kathy Oliver, Stefan Gijssels, et al. Journal of Cancer Policy, Volume 28, 2021, 100282, ISSN 2213-5383, https://doi.org/10.1016/j. jcpo.2021.100282. The European Code of Cancer Practice: https://www.europeancancer.org/resources/198:european-code-of-cancer-practicepublished-in-journal-of-cancer-policy.html
6 Kathy Oliver, Gordon Oliver, Barrie Littlefield, Kristina Knight, David Arons, Danielle Leach (drafting/editorial committee). The Brain Tumour Patients Charter of Rights: https://theibta.org/wp-content/uploads/2022/01/BTPatientsCharterofRights-Updated-180122.pdf
7 The ECO survey report on NLCSC with brain metastases can be downloaded from here: https://www.europeancancer.org/ events/125:community-365-roundtable-meeting-on-metastatic-cancer
The International Brain Tumour Alliance and the American Brain Tumor Association thank all of the Symposium participants for joining us in Vienna.
Photo
The American Brain Tumor Association is a trusted resource for brain tumor patients, caregivers and health care professionals around the world. From a wide range of publications to webinars and educational programs, the ABTA provides information on all tumor types, for all age groups and empowers patients and families by helping them better understand the diagnosis.
LEARN MORE AT abta.org
Working with care and dedication, we aim to develop new therapies that address the greatest needs in cancer healthcare.
Find out more about us. www.daiichi-sankyo.eu
The Warrior Lantern Lighting ceremony at the 2021 International DIPG/DMG Symposium held in Houston, Texas,
Congratulations to the Ghana Brain Tumour Foundation on its official launch!
Dzidzo Dei-Tutu
Market Intelligence Professional, Houston, United States
Dr Teddy Totimeh
Consultant Neurosurgeon, University of Ghana Medical Centre, Accra, Ghana
Eighteen months ago Dzidzo Dei-Tutu, a Market Intelligence Professional based in Houston Texas, United States, noticed that he was having recurrent headaches that just did not go away He put it all down to ‘growing old’ He wears glasses, and just assumed that the pain he was having was due to straining more than usual during reading A father of two young children and married to a paediatrician endocrinologist, he coped with the pain maintaining his role at a high functioning job, while rationalising the pain away month after month He saw an ophthalmologist who sent him to a neurologist, but the neurologist thought everything was okay Things came to a head in the middle of last year, when Dzidzo went back to his native home in Ghana to celebrate the birthday of his grandmother He had to stay indoors for the entire duration because of pounding, relentless headaches
When Dzidzo returned to Houston, he still deferred a full review, until one Saturday morning, he just could not take it anymore He ended up in a hospital emergency room, where a subsequent MRI showed a large frontal lobe tumor arising from his anterior skull base, pushing tightly against his brain, the cause of all the headaches he had been having He was immediately booked for surgery and his brain tumour journey began, from a long surgery which revealed that the tumour was benign, to the challenges of recovery and rehabilitation Over the year of a slow return to life as it used to be, Dzidzo has struggled with difficulty to perform most activities of daily living He has slowly rehabilitated his way back to a normal life, and does not take any of these privileges for granted
During his recovery, Dzidzo had a number of long conversations with his neurosurgeon friend working in Ghana, and was struck by how important it was to have a new way forward in brain tumour care in Ghana Dzidzo decided that starting up a brain
tumour foundation was the best way to do it He spent the next few months consulting other experts, building consensus and by the second quarter of 2024 the new foundation had been registered in the US with a subsidiary in Ghana
On 26th October 2024, the Ghana Brain Tumour Foundation was launched at a dinner in Hotel Zaza, Houston, Texas Friends and family pulled together to make this a very successful event and together they planted the seeds that will nurture a new future for brain tumour care in Ghana The launch was a wellattended dinner with friends, family and work colleagues all coming together to support the theme of the dinner: “Building an ecosystem of care for brain tumours in Ghana”
On this special night, there were speeches from Mr and Mrs (Dr) Dzidzo Dei-Tutu, Dzidzo’s sisters, and from Dr Teddy ➤
Dzidzo Dei-Tutu (center) with friends
Totimeh, a neurosurgeon from Ghana who will be working with the Ghana Brain Tumour Foundation to facilitate brain tumour surgery for patients in Ghana Money raised from the dinner will be used to support an Accra brain surgery mission in November 2024, and also to ship operating microscopes from
the US to Ghana
But there is so much more to do than could be achieved in one night However, 26th October is a landmark day in brain tumour care in Ghana A new dawn in brain tumour care has begun in Ghana n
EUropean reference network for Rare Adult solid CANcers
EURACAN is a patient-centred network which includes 102 centres with high expertise across 26 EU Member States, 14 patient advocacy groups and 22 scientific societies and national rare cancer networks
The activities focus on ten cancer groups: connective tissue (sarcomas), female genital organs and placenta, male genital organs and urinary tract, neuroendocrine system, digestive tract, endocrine organs, head and neck, thorax, skin and eye melanoma, brain and spinal cord.
If you are interested in our activities, do not hesitate to follow us on social media and/or contact us!
www.euracan.eu - contact@euracan.eu
Old Achimotan Association ‘91 (OAA ’91) North American Chapter
Dzidzo Dei-Tutu giving his inaugural speech
ADVERT 4 4/28/22 2:18 PM Page 1
Glioblastoma care across the United States –a survey by OurBrainBank reveals gross disparities in care
Jacob Ellen, MSc, Board Member
OurBrainBank,
United States
David Robles, MA, Project Manager/Researcher
OurBrainBank,
United States
Patient Advocacy Led by Patients
OurBrainBank was founded in the United States in 2017, by Jessica Morris, who died in 2021 after a five-year fight against glioblastoma Her mission in creating OurBrainBank was to turn glioblastoma from a terminal to a treatable disease through patient-powered advocacy and research Her vision lives on in OurBrainBank’s work today, as we strive to amplify the voices of glioblastoma patients and caregivers and fight against inequities in glioblastoma treatment and care
In 2020, OurBrainBank introduced the Glioblastoma Bill of Rights, advocating for universal access to high-quality glioblastoma care regardless of geographical or financial barriers From 2022 to 2023, the organization surveyed its community about these rights, revealing troubling disparities in glioblastoma care access This discovery underscores the urgent need for a large-scale national survey in the United States to identify and address these healthcare inequities comprehensively
Jacob Ellen
Disparities in glioblastoma care survey launched
To gain a comprehensive view of glioblastoma treatment in the United States and uncover any disparities in care, OurBrainBank launched a nationwide survey under the guidance of leading experts: Dr Quinn Ostrom (Duke University), Dr Fabio Iwamoto (Columbia University), and Dr Lakshmi Nayak (Dana-Farber Cancer Institute) This survey aims to hear the perspectives of 500 glioblastoma patients and their caregivers across the country to assess the quality and accessibility of their care OurBrainBank intends to leverage these findings to advocate for improved, equitable care for glioblastoma patients and their families by collaborating with governmental bodies and policymakers Hosted by Survey Global Healthcare, the survey comprises 36 items covering
patient experiences, quality of life, and demographic information It is open to current glioblastoma patients and caregivers of current or recently deceased patients Distribution efforts included OurBrainBank’s newsletters, events, and social media channels, reaching out to their community and partners
Preliminary Results
A total of 297 participants have completed the survey so far, comprising 85% caregivers and 15% glioblastoma patients, with a median age at diagnosis of 57 Of the respondents, 78% had some college education, and 69% reported having commercial insurance coverage Preliminary results showed that while 69% of respondents were informed about tumor testing, 64% did not receive molecular testing beyond initial diagnostics The majority of respondents ➤
David Robles
(65%) were not informed about storing tissue for future testing, and 79% reported their tissue was not stored for potential treatments or clinical trials
Most patients (52%) reported no discussion of seeking a second opinion, and 64% were not offered the opportunity to enroll in clinical trials Finally, 82% of respondents’ doctors recommended the standard-of-care regimen for glioblastoma, including tumor resection, three to six weeks of chemotherapy/radiation, six months of chemotherapy, and sometimes Tumor Treating Fields (TTFields) Yet, 40% reported no discussion of TTFields as an option and 29% of those who were informed reported financial difficulties in accessing TTFields
These findings highlight substantial barriers to comprehensive, personalized glioblastoma care and underscore issues in the dissemination of information regarding treatment options Missed opportunities for tumor testing and tissue storage restrict access to emerging therapies that could enhance outcomes
Limited discussions about second opinions and clinical trials further reduce access to potentially life-extending or quality-of-life enhancing treatments
Additionally, the significant number of patients not offered TTFields therapy, coupled with cost-related challenges, presents critical obstacles to informed decision-making—directly affecting outcomes and quality-of-life for glioblastoma patients
These preliminary findings of our survey have been presented at the 2024 Academy of Oncology Nurse and Patient Navigators (AONN+) Annual Conference in Las Vegas, Nevada and at the 2024 Society for Neuro Oncology (SNO) Conference in Houston, Texas n
To stay up to date about the final results of the study, visit the OurBrainBank website at: https://www.ourbrainbank.org/ create-change/data/.
The Glioblastoma Bill of Rights calls for:
Personalised treatment, a second opinion, access to clinical trials, experimental treatments & more
• raise awareness of brain tumors
• provide support to those affected by Cure Brain Cancer Foundation is the leading voice for brain cancer research, advocacy and awareness in Australia. We strive to rapidly increase brain cancer survival and improve the quality of life for people living with this disease – it’s at the core of everything we do.
Unite our community to increase brain cancer survival & quality of life.
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The Guide was developed in collaboration with UMC Amsterdam. It provides a roadmap to identify and overcome roadblocks along the cancer care pathway and offers actionable insights and tools to enhance cancer care efficiency, drawing from the experiences of 21 All.Can National Initiatives and feedback from the wider All.Can community. Find out more on www.all-can.org
At Glioblastoma.IT ODV, we are dedicated to supporting patients and caregivers by providing up-to-date information on specialized treatment centers, connecting patients and caregivers with top-tier professionals, offering support for those seeking second-line therapies and clinical trials. We work hard to maintain and expand our vital services, facilitate access to experimental treatments and clinical trials, offer direct support to patients Join our community and help us provide essential support to patients and families.
If you are a patient or a caregiver visit our websites www.glioblastoma.it www.glioblastomamultiforme.it call us (+39 3351272678) or email us info@glioblastomamultiforme.it
The Paediatric Neuro-Oncology Trained Volunteer
These unique and innovative Parent Advocate Programs train volunteers to work alongside medical teams in the neurosurgery, oncology, neurology, ICU and palliative care units of paediatric hospitals.
The volunteers learn how to actively assist families during the long hospitalisations. They are on site in the treatment centres and become a highly valued member of the team, providing care and support. The training is free of charge for charities. To learn more, contact us.
Bringing the families to the heart of the hospital
Glioblastoma is a relentless and adaptive brain cancer that affects each patient differently. The chameleon in our artwork symbolizes this ever-changing nature, while the flower represents the hope we all share for a cure.
Visit our website
Australia’s leading brain cancer support charity, supporting over 900 families every year.
www.peaceofmindfoundation.org.au
Funding research and offering information, inspiration and hope for those affected by slow-growing brain tumours.
Low-grade brain tumours can lie undetected for many years before symptoms suddenly appear and turn victims’ lives upside down.
They cause progressive mental and physical problems, and sometimes transform to a more malignant form of brain tumour.
Astro Brain Tumour Fund is working hard to end the anguish for those living with this devastating form of cancer by funding research in the UK and providing a Facebook support group for patients and carers.
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Cancer-sniffing canines can detect malignancies
Karyn Schmidt APRN, CNP, FNP-BC, RN, MSN
University of Chicago, US
Jean Arzbaecher, RN, APN, University of Illinois, US
Mary Ellen Maher, RN, MSN, APN, CNRN
Northwestern Malnati Brain Tumor Institute, Chicago, US
For thousands of years, dogs and humans have been engaged in a great partnership From stories about seizure or diabetic-alert dogs notifying their handlers of an imminent medical issue and ensuring their person's safety to the canine heroes of 9-11 in New York City, humans have enjoyed a highly beneficial relationship with their canine companions
Humans owe a tremendous debt to working canines for their significant roles in protecting police, military and airport personnel and operations to serving a tremendous role in apprehension of criminals and the identification of bombs, human trafficking, illegal weapons and currency Many thousands more of us have been served by therapy dogs in hospitals and cancer support centers or had the gift of a life enriched by a seeing eye dog or a hearing dog
On the horizon is another angle to the human-canine bond –that of cancer detection dogs While academic medical centers and private companies have been exploring how to develop cutting edge technology that mimics the superior olfactory abilities of dogs, other agencies and organizations promote the use of specially trained dogs themselves in early detection screening for cancer in settings such as clinics and health fairs But is this even possible – can dogs truly detect cancer?
Dogs detect diseases, including seizure activity in brain tumor survivors
Unequivocally yes Dogs have proven an often even-greater reliability and accuracy than machines in cancer detection and, further, not only in cancer Dogs have shown competence in identifying pending episodes of narcolepsy (a chronic neurological disorder that makes it difficult to regulate sleep and wake cycles); migraine attacks; hyper- and hypoglycemia (conditions that occur when blood sugar levels are too high or too low, respectively); infection with malaria or COVID-19; early Parkinson’s disease and even fear and stress There is also anecdotal support for a dog’s capacity to warn people with epilepsy of potential seizure activity (Heimbuch, Treehugger, 2022)
Particularly relevant to brain tumor survivors, given their higher likelihood of having had a seizure (especially prior to initial
diagnosis) and their ongoing risk for additional seizure activity, canine medical detection and service dogs may be an impactful and effective way to aid survivors Through the detection of cancer, and also as service dogs for the myriad complications that are often associated with a brain tumor diagnosis, canines paired with brain tumor survivors may prove to be a potentially game-changing partnership
Canines have amazing odor-detecting abilities
The first published reports of dogs’ incredible odor-detection abilities appeared in The Lancet in 1989 reporting a story of a
Penguin, the scent-trained yellow labrador telling her handler that she has found odor (photo credit: Kaz Turek of Turek Studio)
dog repeatedly biting his owner’s mole, which later proved to be melanoma
In 2004, further evidence followed with data from UK-based charity Medical Detection Dogs, which reported that dogs were notably able to identify bladder cancer from urine samples (Otto, 2022) A 2006 study, demonstrating canine identification of breast and lung cancers using human breath samples, showed rates of 88% accuracy for breast cancer and 99% accuracy for lung cancer Even more amazingly, this was across all stages of cancer Additional studies show that canines can accurately identify blood samples of cancer patients to 97% (Heimbuch, 2022) Dogs have shown the greatest competence with the identification of particular cancers, including lung, breast, ovarian, bladder and prostate cancers, with a reported 99% accuracy rate in identifying prostate cancer through urine samples (Chandler, 2021) This impressive success rate with highly-researched cancers suggests that canines may also be able to detect a wider variety of cancers than currently supported by research, which would be tremendous news for people with a brain tumor or other CNS cancers This would be another tool to add to the diagnostic and surveillance toolboxes in neuro-oncology
Super-sniffers
Dogs love to use their noses Most dog owners can attest to the challenge of keeping a dog moving on a walk when there are great ground smells competing for a dog’s attention With more than 220 million scent receptors (compared to humans’ five million), complex and extended bilateral nasal passages and a significantly larger olfactory bulb, dogs have a 10,000 to 100,000 times greater ability to detect odors than humans (Heimbuch, Treehugger, 2022) Studies have shown that dogs have a less than 0 001 parts per billion olfactory detection threshold, which is far superior to the 100-400 parts per billion achieved by comparable machine “noses” - electronic sensing devices intended to detect odors or flavors (Jendrny et al, 2021)
So how do dogs actually identify cancer in humans?
Cells emit volatile organic compounds (VOCs) and, though researchers don’t yet know for sure, it is possible that different
cancers and other disease states emit specific VOC signatures If dogs are exposed to substances (such as blood, breath, urine, faeces) that are known to contain a particular cancer, dogs learn to associate that targeted disease (and its affiliated VOCs) through repetition and specificity of training (Jendrny et al, 2021) Similarly, disease states may emit an odor recognizable to a dog as abnormal, allowing the paired training of odor plus reward to develop a disease-specific alert dog According to Pamela JulianoMarek, owner and trainer at Blitzen Canine Academy in Frankfort, Illinois,, dogs are not only able to smell everything “individually” but also are able to “pick up a variety” of odors and “multiple cancers ” Through the identification of those individual odors, the dog is able to naturally assimilate that cacophony of odors into a scent profile that he can then mark for his handler
Current research focuses on using machine-learning and innate canine ability to create automated detection systems that can pair greater volumes of sample analysis with identification finesse Because, while dogs can’t tell you the components that create a particular odor, they have thus far proven superior to machine “noses” at discriminating between a collection of odors and a disease state While a machine might be able to identify molecules, it cannot pull the “scent character” from those discrete elements that a dog can identify collectively as cancer (Chandler, 2021) Dogs have shown the ability to not only identify a collection of VOCs or odors as disease, but to further discriminate between one known present cancer and an additional, yet unknown, cancer present in a sample In one bladder cancer detection study, a dog continually alerted on a control subject who was known to be cancer-free – the subject was concerned enough to have further testing, from which he learned he did, in fact, have early-stage cancer (Chandler, 2021)
No surprise to Nancy Reyes, owner and trainer at For Your K9 in Elmhurst, Illinois, who states that “teaching the dog the game of low odor detection” is the key to developing a successful detection dog, regardless of target According to Reyes, successful canine detection results from “building that dog’s tolerance” for the physical exhaustion inherent in the work, always incorporating training time into the dog’s work schedule and having a clear understanding of how odor works
A nosework-trained border collie named Peace (above left) and a yellow labrador named Penguin (above right) demonstrate odor identification on equipment similar to that used in clinical laboratories to detect cancer (photo credit: Karyn Schmidt and Pamela Juliano-Marek)
The trainer must teach and proof odor detection across sample types and intensities and recognize environmental factors that might impact the canine’s ability to successfully identify odor Most important, though, is the relationship between dog and handler Though Reyes states: “There’s not going to be a machine that’s going to be able to top” a dog’s detection skills, she emphasizes the exhausting nature of scentwork for dogs and protecting their well-being
Practice
makes perfect
Given their inborn interest in scent and remarkable ability to inherently “profile” disease states based on odor collections, how are dogs trained to reach a level of expertise in cancer detection? Juliano-Marek spent fifteen years training drug and bomb identification dogs for local police departments, and her training philosophy hinges on both choosing the dog with the right temperament for the work and having a foundational understanding of how dogs identify odor and share that knowledge with their handlers
Using a great variety of training techniques and settings, along with a significant time commitment, handlers and their canine partners are able to develop reliable and consistent identification of target odors, which the canine communicates clearly to their human partner What handlers call a “final response” is the means by which dogs share their findings While bomb dogs are trained to “sit and stare” when they find a bomb, drug dogs might show a more aggressive response wherein “they scratch, they bite, they bark at it ” The technical skills of marking low odor identification and developing the skill set between dog and handler is time-intensive, requires consistent and good quality repetition and is relationshipdependent – handlers learn to trust their canine partners
because “they’re very reliable” due to the extensive training both partners put in
What does the future hold for cancer detection dogs?
Most dogs employed in cancer detection remain in the lab, where they identify cancer amongst samples of various body fluids and breath In general, cancer detection canines haven’t yet made the transition to clinics and wellness and health fairs The near future may see a shift in cancer detection dogs from the lab to the clinic, however, given the endorsement of their remarkable cancer detection skills by many scientific and training experts and with the push to bring early cancer detection screening to the masses Humans may yet be on the verge of discovering one of the greatest dynamics of their long-standing relationship with dogs to date – that of the cancer detection canine n
References
Chandler, D (2021, February 17) Toward a disease-sniffing device that rivals a dog’s nose MIT News https://news mit edu/2021/disease-detection-device-dogs-0217
Heimbuch, J (2022, August 3) 6 medical conditions that dogs can sniff out Treehugger https://www treehugger com/medical-conditions-that-dogs-can-sniff-4864177
Jendrny, P , Twele, F , Meller, S et al Canine olfactory detection and its relevance to medical detection BMC Infect Dis 21, 838 (2021) https://doi org/10 1186/s12879-02106523-8
Otto, C Sniffing out diseases Nature 606 (2022) https:// media nature com/original/magazine-assets/d41586-02201629-8/d41586-022-01629-8 pdf
Author Karyn Schmidt’s dog, Puffin, demonstrates nose work skills with identification of odor (photo credit: Kaz Turek of Turek Studio)
32 years already !
The ARTC (Association for Brain Tumour Research) founded by physicians and patients’ relatives is celebrating its 32nd anniversary in 2024.
It supports basic as well as clinical research in the area of neuro-oncology and helps the hospital services taking care of patients suffering from brain tumours.
Its contribution extends to :
- Attributing research grants to labs for research projects and fellowship scholarships ;
- Supporting educational program for caregivers ;
- Improving hospital welcoming conditions for patients.
It has delegations in the different regions of the country at its disposal to relay its actions.
contact@artc.asso.fr Association pour la Recherche sur les Tumeurs Cérébrales Groupe Hospitalier Pitié-Salpêtrière Institut de Neurologie 47-83 boulevard de l’Hôpital 75013 PARIS - FRANCE artc.asso.fr
#HatsForHope is a movement to raise awareness for brain cancer Join us in spreading hope and making a difference! h a t s f o r h o p e
Of the 27 people diagnosed with a brain tumour every day in Canada, 8 will find out they have brain cancer.
Malignant or not, brain tumours are life-altering, and treatment options are limited and often invasive
Providing support for brain tumour patients, families and caregivers across Australia.
• 24 hour support line service.
• Free information packs for the newly diagnosed.
• Monthly e-news service.
• Regular Australian magazines.
• Support groups for patients, families and carers.
• Connection to local support groups and activities, as well as social media support.
• Patient forums with international experts.
• Representing the patient policy making.
• Educational grants for allied health professionals.
btaa.org.au
Support: 1800 857 221
This guide was recently released for patients, care partners and advocates. The goal of this guide is to provide basic facts about ependymoma to increase education and awareness about the
BNOS London
Biotechnology and
18th – 20th June 2025
University of Manchetsr
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Become
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The Lithuanian Brain Tumour Patients And Their Caregivers Society
The LBTPCS unites those who are affected by a brain tumour and those interested in this disease, including patients, their families, health care professionals and researchers.
Educate Support Collaborate Raise awareness
Hospital of Lithuanian University of Health Sciences Kaunas Clinics Department of Neurosurgery Eivenių Str. 2, LT-50009, Kaunas, Lithuania
Space-themed annual Art Festival of the Brain Tumor Foundation of Indiaan 'out of this world' experience
The Brain Tumor Foundation (BTF) of India Annual Art Festival was held at Tata Memorial Hospital in Mumbai on 4th Feb 2024 (coinciding with World Cancer Day)
A panel discussion on issues and challenges affecting brain tumor patients and their caregivers was conducted with representative participation by various stakeholders (including patients, family members, medical social workers, philanthropic donors and treating healthcare professionals)
Patients enthusiastically participated in the drawing and painting competition with the winning painting/drawing featuring as greeting cards for distribution Over 300 patients and their caregivers attended the Art Festival which was based on the theme of “Space” There was a space mascot and a space-inspired photobooth
In keeping with the theme, a renowned scientist from the Indian Space Research Organization addressed the gathering A number of childhood brain tumor survivors who demonstrated exemplary courage in
their fight against the disease were also honoured with Victor Awards
The program ended with a cultural program comprising of a fancy dress
competition, and a dancing and singing competition for patients as well as performances by some staff members n
Professor Dr Tejpal Gupta, In Charge, Brain Tumor Foundation, Tata Memorial Centre, Mumbai, India
Translators needed for The Brain Tumour Patients’ Charter of Rights
The Brain Tumour Patients’ Charter of Rights can provide everyone, no matter where they live, with an aspirational framework for improving healthcare systems and communications – goals which we hope will help reduce inequalities from country to country and support better outcomes
The Charter is an organic, partly aspirational document, intended to evolve as progress is made It is meant to be a positive tool that can be used by all sectors of the international brain tumour community
The Charter is not solely a project of the IBTA but an effort on behalf of many
CHARTA PRÁV PACIENTŮ S NÁDOREM MOZKU
CHARTE DES DROITS DU PATIENT ATTEINT DE TUMEUR CÉRÉBRALE
CHARTA DER RECHTE VON HIRNTUMORPATIENT*INNEN
patient advocacy organisations in the international brain tumour community who have contributed to its development The Charter has been created through a collaborative and iterative process
We welcome volunteers to translate the Charter into different languages In order to maximise dissemination and use of The Brain Tumour Patients’ Charter of Rights around the world, we warmly welcome volunteers to translate the Charter document into various languages A set of guidelines is available to help
assist in this task If you are interested in helping translate the Charter, please contact kathy@theibta org
Did you know?
The Charter cover design symbolises both a neural network and also the network of brain tumour organisations – patient and healthcare professional – around the world The background of the cover and inside page borders are in grey which, of course, is the advocacy and awareness colour for brain tumours To view translations of the Charter, visit https://theibta org/charter/translations/ n
HJERNETUMORPATIENTERS CHARTER OM RETTIGHEDER
LA CARTA DEI DIRITTI DEI PAZIENTI AFFETTI DA TUMORE CEREBRALE
KARTA PRAW PACJENTÓW Z GUZAMI MÓZGU
CARTA DE DIREITOS DOS DOENTES COM TUMOR CEREBRAL
CARTA DE LOS DERECHOS DE LOS PACIENTES CON TUMOR CEREBRAL
HJÄRNTUMÖRPATIENTERNAS RÄTTIGHETSSTADGA
Beyond the diagnosis: research, volunteering and treatments for brain tumours –insights from Glioblastoma.it
Roberto Pugliese Glioblastoma.IT ODV, Ruda, Italy
In autumn 2024, the Council Chamber of the Municipality of Ruda (a small city in northeast Italy, close to Trieste) was transformed into a place of hope and sharing, with Mayor Franco Lenarduzzi in the front row to testify to the commitment of the municipal administration in supporting initiatives of high social value
The occasion was the 17th International Brain Tumor Awareness Week (26th October to 2nd November 2024), and the atmosphere that was created went far beyond a simple information event
Among those present, it was impossible not to notice Mattia Marchiò With the Tumour Treating Fields (TTFields) device clearly visible on his head, Mattia gave a human face to the daily fight against brain tumors Mattia did not limit himself to just being present: he shared his experience with a strength and determination that moved everyone in the room
Voluntary organisations have a strong voice
The various voluntary associations attending the awareness event in Ruda gave a voice to those who fight the battle against a brain tumour every day Valentino Listuzzi, president of the Amici di Federico Association, illustrated the valuable work done in supporting families, while the volunteer organization Glioblastoma IT, part of the international IBTA network, presented a series of innovative initiatives
Particular interest was aroused by the “Glioblastoma Navigator” project, a cutting-edge platform that combines artificial intelligence and medical expertise to help patients and caregivers in managing their treatment path Alongside this, the “Speranza e Coraggio” project will provide remote psychological support to patients and family members, with the support of the Region La Casa di Joy (a volunteer organisation which hosts families of children with cancer so that they can stay close to their treating hospital) also brought its important testimony to the field
Particularly touching was the intervention of the parents of Samuele, S Calligaris and M Mattiazzi M Mattiazzi wrote a book (Il Figlio di Tutti) about her son’s journey with primary central nervous system neuroblastoma, thus transforming their pain into active commitment for others
Also at the event, neurosurgeon Dr F Tuniz from the health district of Udine, presented the latest developments in brain
tumor research and treatment The discussion was enriched by the interventions of psycho-oncologists Fabio Campanella and Daniela Tasinato, who emphasized that psychological support is not an option, but an essential component of the treatment path
More than just a medical issue
The evening demonstrated that the fight against brain tumours is not just a medical issue, but a challenge that requires the commitment of everyone: local governments, doctors, researchers, volunteers, patients and families Different stories were told on the evening, but they were united by a common thread: the determination not to give up and the will to support those who are facing this difficult battle
As the evening drew to a close, it was clear to everyone present that events like this are not only moments of awareness, but real catalysts of hope and solidarity A strong message emerged: no one should face this challenge alone The territory is responding united, from the institutions to volunteers n
Photos of the Glioblastoma.it event in the council chamber of the municipality of Ruda
The 2024 Walk4Brains Rotterdam
Linda Poelman
Stichting STOPherstentumoren.nl, The Netherlands
The weather couldn't have been better!
On 26th October 2024, from 10:00 am to 11:00 am we had the first Walk4Brains in Rotterdam My 11-yearold son Tobias has a brain tumour and myself together with Ellen Poelman, Tobias’s aunt, organized the Rotterdam walk event to raise research funds for STOPhersentumoren nl, a Dutch foundation which supports much-needed research into brain tumours
The 5 km walk through the heart of Rotterdam was something that everyone could enjoy About 100 participants, including 30 children, strolled along a beautiful walk from Rotterdam Central Station, past the Sophia Children's Hospital, to return to the square in front of the station
The date of the walk – 26th October –and passing the Sophia Children’s Hospital had very special meaning to me This was the date on which my son Tobias was first hospitalised at the Sophia Children’s Hospital due to a hemorrhage from his brain tumour The date of the walk was also the first day of the 2024 International Brain Tumour Awareness Week
Everyone on the walk wore a special blue vest with the logo of STOPhersentumoren nl on it It was very special to see a long line of blue vests walking through the city!
We wanted the Walk4Brains Rotterdam to raise as much money as possible for the STOPhersentumoren nl foundation because we have so many unmet needs in the brain tumour community and funds are desperately required for more research into the causes of and treatments for brain tumours
The moment when Tobias handed
over a cheque to the Chairperson of STOPhersentumoren nl, Klaske Hofstee, was very emotional and very special
We raised €11,045, which is a wonderful contribution The event was so memorable – and it gave us all hope for the future
Photos by Silvia Groenendijk
And the 2024 Walk4Brains in Rotterdam has certainly inspired us to walk again next year n
For more information on the work of STOPhersentumoren.nl please visit their website at https://stophersentumoren.nl/overhersentumoren
Keep up to date…
The International Brain Tumour Alliance maintains a constantlyupdated list of major regional, national and international neuro-oncology and cancer conferences and other meetings relevant to brain tumours. These conferences and meetings include those organised by brain tumour patient organisations, medical societies and others.
Educational webinars and virtual events are also listed on the IBTA website calendar.
If you are organising or are aware of a forthcoming patient/ brain tumour advocacy event or a scientific conference, whether it is virtual or in-person, taking place in 2025 or 2026, please let us know by emailing kathy@theibta.org
You can view the IBTA calendar of events here: https://theibta. org/events-and-conferences/ n
Photos by Tim Bennett
Linda Poelman and her 11-year-old son, Tobias
Focused ultrasound therapy for brain tumours
Dana Hutton, MBChB, Academic Foundation Doctor
Newcastle Upon Tyne Hospitals NHS Foundation Trust, Newcastle Upon Tyne, UK
Focused ultrasound (FUS) waves can be used to create kinetic energy and vibrations that result in both mechanical and thermal damage to targeted tissue There is increasing clinical research investigating the use of FUS for the treatment of brain tumours FUS represents an attractive therapeutic option for difficult surgical targets (e g deep-set tumours), as well as for more aggressive, treatment-resistant tumours (e g glioblastoma (GBM)) (2,3)
The main clinical advantage of FUS is that it is an “incisionless” method of surgery The FUS waves have the capability to reach a desired brain region without the need for general anaesthesia, or exposure of underlying skull or brain It is potentially a repeatable outpatient ‘daycase’ procedure, which minimises time in hospital and allows patients more time at home with family Additionally, the accuracy of FUS ensures damage only occurs in desired locations (i e tumour), and not to adjacent healthy tissue
There are different methods of delivering FUS.
The most clinical trial progress to date has involved the use of a helmet containing 1024 ultrasound transducers that a patient wears whilst entering a magnetic resonance imaging (MRI) machine MRIguided focused ultrasound (MRgFUS) allows for precise definition of the target tissue at millimetre resolution as well as real-time temperature evaluation of lesional effects during the procedure Other methods of delivering navigated FUS trans-cranially include large-field moveable
arrays, or a water-filled rubber cap embedded with ultrasound transducers
Other clinical trials have started using an implantable device that is embedded within the skull after initial brain surgery The latter device uses less FUS energy as it bypasses the relatively thick human skull However, the target tissue is limited to being near the site of previous surgery
MRgFUS is already approved for use in patients with essential tremor, where FUS waves are targeted to the “tremor centre” of the brain - the thalamus FUS-induced thermal lesioning results in a satisfactory improvement of tremor in approximately 80% of cases (1)
For brain tumours, FUS represents a useful therapeutic tool with two main applications:
1 Reversible opening of the blood-brain barrier (BBBO): which can enhance drug delivery, potentiate the release of tumour biomarkers for liquid biopsy, and induce tumour microenvironment (TME) disruption The TME is the ecosystem of
cells, molecules, and blood vessels that surround and support a tumour
2 FUS-induced activation of sonosensitisers: which induce selective brain tumour cell death (sonodynamic therapy)
Drug Delivery
A small clinical safety trial (NCT03712293) looked at the potential for MRgFUS to increase the efficacy of the chemotherapy agent temozolomide via BBBO in six GBM patients, where the BBB was opened during the six concomitant TMZ treatments that patients receive as standard of care after radiotherapy (5) After one year of follow-up, there were no immediate or delayed complications, demonstrating that FUS-induced BBBO (to enhance intracranial uptake of temozolomide) is safe and repeatable Other Phase 1 and 2 clinical trials using different FUS delivery devices and various chemotherapy agents are currently underway in the USA and Canada
FUS-induced BBBO is also an attractive therapy for brain metastases (BMs), as has been demonstrated for increasing delivery of Herceptin for HER2+ breast cancer metastases (6) It is less invasive than standard therapies, doesn’t involve ionizing radiation, and is a repeatable therapy Considering this, the ongoing clinical trial NCT05317858 (LIMITLESS) is investigating the use of FUS-induced BBBO to increase the efficacy of the immunotherapeutic agent pembrolizumab for BMs secondary to non-small cell lung cancer (NSCLC) (7)
Liquid Biopsy
FUS-induced BBBO is also being trialled to facilitate liquid biopsy of brain tumours Liquid biopsy is the sampling of blood to retrieve tumour-related gene information (circulating cell-free DNA) without invasive biopsy via craniotomy FUS-induced BBBO would allow more of this DNA to enter the blood stream and potentially enable early detection of tumour-related gene mutations (i e gene profiling) and personalisation of anti-cancer therapies
This may be particularly helpful in the treatment of BMs Some BMs harbour actionable mutations that can be targeted with specific therapies (e g HER2 mutations in breast cancer, ALK rearrangements in NSCLC) (8)
FUS-facilitated liquid biopsy could also be helpful for differentiating tumour recurrence from pseudo-progression for tumours previously treated with surgery or radiotherapy
Sonodynamic Therapy (SDT)
Sonodynamic therapy (SDT) is the application of FUS in combination with a chemical agent to trigger ‘apoptosis’ (cell death which occurs as a normal and controlled part of an organism's growth or development) The chemical agent used is termed a ‘sonosensitiser’, as its anti-tumoural effect is activated by the FUS waves Sonosensitisers are tumourspecific, meaning that they preferentially accumulate within tumour cells, whilst avoiding surrounding healthy brain tissue (Figure 2)
FUS delivery releases energy that brings the sonosensitiser to an excited state in which it releases reactive oxygen
Figure 1: Blood brain barrier (BBB) opening to deliver drugs: The BBB is impermeable to most drugs. However, FUS represents a method of transiently and reproducibly opening this barrier, allowing drug molecules (indicated as blue spheres in the above figure) such as chemotherapy agents (e.g. temozolomide) to enter the brain that normally could not. Drug molecules are now able to move out from the endovascular space (the space where blood flows inside blood vessels) and into surrounding brain tissue due to FUS-induced opening of tight junctions that span between adjacent endothelial cells.
species (ROS), specifically in the tumour cells where it has accumulated ROS are toxic, highly-reactive chemicals capable of damaging DNA and cellular membranes, as well as triggering the activation and expression of pro-apoptotic genes within target tumour cells
Blood-brain barrier opening (BBBO)
The blood-brain barrier (BBB) is composed of endothelial cells and tight junctions which join them The BBB also contains selective transporters that protect the brain from toxins and pathogens Unfortunately, the BBB also represents an obstacle to the treatment of brain tumours by hindering
the entry of chemotherapeutics, targeted treatments, and immunotherapies into the central nervous system
A key attraction of FUS is that it has been shown to induce transient and reproducible BBBO and enhance drug delivery (Figure 1) Low-intensity FUS in combination with microbubble (MB) injection has now become the primary method for BBBO – whereby the previously injected MBs oscillate (expand and contract) at the frequency of the FUS waves upon passing through the sonication This disrupts elements of the BBB for approximately 24 hours (4), which allows drugs to enter the brain or tumour
Figure 2: Sonodynamic therapy (SDT). Sonosensitiser molecules (indicated as blue spheres in the above figure) are ingested or injected and selectively absorbed by tumour cells. Subsequent exposure to FUS waves activates the sonosensitizer that has already accumulated in tumour cells – triggering tumour-specific cell death.
5-aminolevulinic acid (5-ALA) is a sonosensitiser approved for use in aiding surgical resection of GBM tumours 5-ALA is readily converted by GBM cells into protoporphyrin (PpIX), which selectively accumulates within GBM cells
The patient drinks 5-ALA prior to surgery During surgery, shining blue light on the area of the tumour, and the edges surrounding it causes PpIX to fluoresce –making any remaining tumour cells around the resection margin appear pink (2) This visual aid allows neurosurgeons to better
differentiate between normal brain and tumour It optimises safe resection and increases the extent of tumour resection
5-ALA-SDT is not yet approved for use in GBM patients However, preclinical studies have shown that SDTmediated PpIX activation can trigger ROS upregulation, and selective cell kill of tumour cells (9) The exact mechanism of PpIX activation is unclear; however, it is hypothesised that there could either be direct activation by the energy generated from rapid collapse of microbubble formation or the FUS waves themselves stimulate the release of a flash of blue light that activates the sonosensitiser
Emerging clinical trials of FUS in GBM patients show promising results This includes
a recent phase 0 clinical trial (NCT04559685) of 5-ALA-SDT in recurrent high-grade glioma patients (10) Patients were given intravenous 5-ALA six to seven hours prior to low-intensity FUS Cell death was observed within four days of a single treatment, and SDT was welltolerated in all patients
Following this success, a phase 2 study for progressive or recurrent GBM patients has been commenced (SDT-202, NCT05370508) (11) In Europe, a group in Milan is trialling the safety of oral ALA in newly diagnosed GBM (Sonic ALA, NCT04845919) There is hope that future trials will demonstrate increased survival rates for patients receiving SDT
Another research group are also recruiting recurrent GBM patients to trial 5-ALA-SDT (Trial GBM 001, NCT06039709) using a frameless ultrasound delivery device (12) In this trial, patients undergo SDT one to three weeks prior to resection – as opposed to the above trials, where patients have already received previous treatment options
A commercial trial using a similar frameless device has recently reported the results of their Phase 1 study in 12 patients with recurrent high grade brain tumours They demonstrated safety, lack of side effects and repeatability of SDT, with very encouraging progression-free and overall-survival above historic control results – a Phase 2 study is due to commence in 2025 (13)
A study of 5-ALA-SDT conducted for paediatric patients with diffuse intrinsic pontine glioma (DIPG), SDT-201 NCT05123534 is in the analysis phase but has shown SDT to be safe (14) Even with the current standard of care (conventional fractionated radiotherapy), the average survival for DIPG patients remains around nine to twelve months from diagnosis
The group recruited 15 DIPG patients following standard radiation therapy
They have reported that the first recruited patient tolerated 5-ALA-SDT well – with no adverse effects, and clinical improvement of both walking and double vision
SDT and effects on distant tumours
It is hoped that SDT could also induce an “abscopal effect” The abscopal effect is a phenomenon where direct therapy to the primary tumour can also promote regression of distant tumours
The observation of SDT to generate an abscopal effect is still largely unexplored
However, preclinical data suggest that localised SDT has the potential to enhance the body’s overall immune recognition of tumour cells and promote immunemediated destruction of distant tumours (15) This, therefore, makes SDT attractive for treating patients with multifocal brain tumours, or known brain metastases
Conclusion
FUS could represent a novel progression from the current standard-of-care for GBM patients, as well as other brain tumour diagnoses However, there is a lack of standardized parameters that provide maximal clinical efficacy, whilst avoiding potential side effects Before FUS is approved for clinical use, the safest FUS intensity, transducer frequency, duration and number of cycles, as well as choice and dose of sonosensitiser must be determined (7) We also need to further define eligibility criteria for FUS, including: stage of disease (i e primary or recurrent), patient performance status, and degree of comorbidities (medical conditions that a person has in addition their brain tumour diagnosis) (3)
Thus far, FUS has proven to be well-tolerated in patients enrolled in research studies and is associated with fewer local and systemic sideeffects than radiotherapy Additionally, in contrast to standard chemotherapeutics, sonosensitising agents are non-toxic and pharmacologically safe
FUS represents a uniquely non-invasive and highly selective approach to directly targeting solid tumours (via sonodynamic therapy) (16), as well as increasing the efficacy of existing therapies (via BBBO) These features make FUS particularly attractive as: (i) a first-line option for patients unsuitable for surgery (or other modalities), (ii) a salvage option for patients who have failed with other treatments, and (iii) a method to enhance the effects of standard therapies n
Acknowledgements:
The authors have no conflicts of interest to declare Figures courtesy of the Focused Ultrasound Foundation with permission to reproduce them in this article
References
1 Martínez-Fernández R, Matarazzo M, Máñez-Miró JU, Obeso JA The Role of Focused Ultrasound in the Management of Movement Disorders: Insights after 5 Years of Experience Mov Disord Clin Pract 2021 Jul 23;8(5):681–7
2 Keenlyside A, Marples T, Gao Z, Hu H, Nicely LG, Nogales J, et al Development and optimisation of in vitro sonodynamic therapy for glioblastoma Sci Rep 2023 Nov 18;13(1):20215
3 Bonosi L, Marino S, Benigno UE, Musso S, Buscemi F, Giardina K, et al Sonodynamic therapy and magnetic resonance-guided focused ultrasound: new therapeutic strategy in glioblastoma J Neurooncol 2023 May;163(1):219–38
4 Bérard C, Truillet C, Larrat B, Dhermain F, Estève MA, Correard F, et al Anticancer drug delivery by focused ultrasound-mediated blood-brain/tumor barrier disruption for glioma therapy: From benchside to bedside Pharmacol Ther 2023 Oct;250:108518
5 Park SH, Kim MJ, Jung HH, Chang WS, Choi HS, Rachmilevitch I, et al OneYear Outcome of Multiple Blood–Brain Barrier Disruptions With Temozolomide for the Treatment of Glioblastoma Front Oncol 2020 Sep 10;10
6 Meng Y, Reilly RM, Pezo RC, et al, MR-guided focused ultrasound enhances delivery of trastuzumab to Her2-positive brain metastases Sci Transl Med 2021 Oct 13;13(615)
7 Alikacem N National Library of Medicine 2023 Blood-brain Barrier (BBB) Disruption Using Exablate Focused Ultrasound With Standard of Care Treatment of NSCLC Brain Mets Available from: https://clinicaltrials gov/study/ NCT05317858
8 Chen YH, Moore D, Lee CC, Su YH Focused ultrasound for brain metastases: an update on global clinical trials J Neurooncol 2023 Oct 1;165(1):53–62
9 Wu S-K, Santos MA, Marcus SL, Hynynen K (2019) MR-guided focused Ultrasound facilitates Sonodynamic Therapy with 5-Aminolevulinic acid in a rat glioma model Sci Rep 9(1):10465
10 Sanai N National Library of Medicine 2023 Study of Sonodynamic Therapy in Participants With Recurrent High-Grade Glioma Available from: https://classic clinicaltrials gov/ct2/show/NCT04559685
11 Andresen C National Library of Medicine 2024 A Study of Sonodynamic Therapy Using SONALA-001 and Exablate 4000 Type 2 0 in Subjects With Recurrent GBM Available from: https://clinicaltrials gov/study/NCT05370508
12 Moosa S National Library of Medicine 2024 Sonodynamic Therapy in Patients With Recurrent GBM (GBM 001) Available from: https://classic clinicaltrials gov/ct2/show/NCT06039709
13 Schulder M National Library of Medicine 2024 Study to Evaluate 5-ALA Combined With CV01 Delivery of Ultrasound in Recurrent High Grade Glioma Available from: https://www clinicaltrials gov/study/NCT05362409
14 Keating, G F , Chesney, K M , Patel, et al (2024) MR-guided focused ultrasound in pediatric neurosurgery: current insights, technical challenges, and lessons learned from 45 treatments at Children’s National Hospital Neurosurgical Focus, 57(3), E6
15 Xia Y, Yang R, Zhu J, Wang H, Li Y, Fan J, et al Engineered nanomaterials trigger abscopal effect in immunotherapy of metastatic cancers Front Bioeng Biotechnol 2022 Oct 26;10
16 Marcus SL, de Souza MP Theranostic Uses of the Heme Pathway in NeuroOncology: Protoporphyrin IX (PpIX) and Its Journey from Photodynamic Therapy (PDT) through Photodynamic Diagnosis (PDD) to Sonodynamic Therapy (SDT) Cancers 2024 Feb 10;16(4):740
Tumour Patient Advocates
Bridging our communities across the globe... building progress... building hope
25th - 28th June 2023
THE INTERCONTINENTAL WIEN HOTEL, VIENNA, AUSTRIA
Report written by Jacqueline Partarrieu
Photo credit: Above the roof tops of Vienna by Christian Stemper at Wien Tourismus
Fifth Biennial World Summit of Brain Tumour Patient Advocates, Vienna, Austria - 25th to 28th June 2023
Acknowledgements and sponsors
The International Brain Tumour Alliance (IBTA) is grateful to the following companies/organisations for their support of the Fifth World Summit of Brain Tumour Patient Advocates.
In addition…
We are very appreciative of the wise advice, help and support provided by the IBTA’s Senior Advisors on this project: Jean Arzbaecher, Jenny Baker, Rosemary Cashman, Maureen Daniels, Stuart Farrimond, Anita Granero, Carol Kruchko, Sharon Lamb, Mary Lovely, Mary Ellen Maher, Christine Mungoshi, Sally Payne and Chris Tse.
We were delighted to welcome to the 2023 World Summit of Brain Tumour Patient Advocates in Vienna representatives of leading patient advocacy, support and information from around the world. Thank you all so much for your presence at this Summit.
A big thank-you to the oncology professionals, research specialists and medical society representatives who made time in their hectic work schedules to join us in Vienna as plenary speakers, workshop leaders and panel participants.
Thanks and appreciation go to Ms Christine Quah, Manager, Global Accounts, HelmsBriscoe for her invaluable help in finding and securing our Summit venue at the InterContinental Wien Hotel.
Many thanks also to the InterContinental Wien Hotel’s Garry Loefgen (Head of Commercial in charge of Sales, Marketing, Revenue and Reservations) and Stefan Schmid (Group and Event Sales Executive) for their impeccable help and support with our accommodation and conference arrangements.
Warmest thanks to Edwina Kelly (edwina@edwinakellydesign.co.uk), our wonderful graphic designer for her help with this Summit Report.
Special thanks to our report writer, Jackie Partarrieu. We were delighted she can join us in Vienna to take detailed notes and then produce the text for this report.
We are very grateful for the talents of our photographer, Martin Hormandinger (www.mh-photography.at), whose wonderful pictures appear in this Summit report.
Last but by no means least, heartfelt thanks for IBTA Co-Director Gordon Oliver’s unfailing support and patience over the months of planning that have gone into this year’s Summit, starting back in the depths of the pandemic in 2020/2021.
The IBTA World Summit of Brain Tumour Patient Advocates is a project of the International Brain Tumour Alliance (IBTA) and is a wholly independent activity conceived, planned and carried out by the IBTA. For details of the IBTA’s sponsorship and transparency policies, please see www.theibta.org.
Fifth Biennial World Summit of Brain Tumour Patient Advocates, Vienna, Austria - 25th to 28th June 2023
5th Biennial World Summit of Brain Tumour Patient Advocates
25th - 28 June 2023, in Vienna, Austria - The InterContinental Wien Hotel
Bridging our communities across the globe, building progress, building hope.
The Programme
DAY
1
- SUNDAY 25TH JUNE 2023
REGISTRATION
INTERNATIONAL BRAIN TUMOUR ALLIANCE
Throughout ARRIVALS at the Intercontinental Hotel, All Summit participants The InterContinental Hotel, the day Johannesgasse 28, 1030 Vienna, Austria. Check in. ground floor hotel reception desk
2:00pm to REGISTRATION FOR PARTICIPANTS
All Summit participants The IBTA Hospitality
7:00pm attending the Fifth Biennial World Summit of Jean Arzbaecher (USA) Desk on the ground floor, (5 hrs) Brain Tumour Patient Advocates. and Mary Ellen Maher (USA) lobby area of the in charge of registration InterContinental Hotel
Evening EVENING AT LEISURE IN VIENNA
DAY 2 - MONDAY 26TH JUNE 2023
All Summit Participants
SESSION 1 - PLENARY LOCATION
Chair: Kathy Oliver (UK) Ballroom (Ballsaal), InterContinental Hotel
9:00am to WORLD SUMMIT OF BRAIN TUMOUR
Speaker: Kathy Oliver (UK), Ballroom (Ballsaal), 10:00am PATIENT ADVOCATES OPENING SESSION - All Summit participants InterContinental Hotel (60 mins) welcome and introductions of participants
10:00am to INNOVATIVE SURGICAL APPROACHES TO BRAIN
Speaker: Friedrich Erhart (Austria) Ballroom (Ballsaal), 10.15am AND CNS TUMOURS InterContinental Hotel (15 mins)
10:15am to UPDATE ON RADIOTHERAPY FOR BRAIN AND Speaker: Carola Ballroom (Ballsaal), 10:30am CNS TUMOURS (INCLUDING STEREOTACTIC Lutgendorf- Caucig (Austria) InterContinental Hotel (15 mins) RADIOSURGERY, PROTON BEAM, ULTRA-HIGH DOSE RATE (FLASH) RADIOTHERAPY, ETC)
10:30am to COFFEE/TEA BREAK AND NETWORKING
All Summit Participants Ballroom (Ballsaal) Foyer 11:00am (30 mins)
PLENARY SESSION 2
11:00am to THE MOLECULAR ERA - UPDATE ON THE WHO
LOCATION
Chair: Kathy Oliver (UK), Ballroom (Ballsaal), Chair and Founding Co-Director, InterContinental Hotel
Speaker: Susan Chang (US) Ballroom (Ballsaal), 11:15am 2021 CLASSIFICATION OF BRAIN AND InterContinental Hotel 15 mins CNS TUMOURS
InterContinental Hotel (15 mins) AND TARGETED THERAPEUTICS IN MOLECULARLY DEFINED SUBSETS OF GLIOBLASTOMA)
11:45am THE WORLD OF PATHOLOGY FOR BRAIN
Speaker: Adelheid Woehrer Ballroom (Ballsaal), to 12:00 noon AND CNS TUMOURS: A NEURO-PATHOLOGIST’S (Austria) InterContinental Hotel (15 mins) PERSPECTIVE
12:00 noon METASTATIC BRAIN TUMOURS (CLINICAL
Speaker: Manmeet Ahluwalia Ballroom (Ballsaal), to 12:15pm PERSPECTIVE – FEEDBACK FROM THE InterContinental Hotel (15 mins) INTERNATIONAL PATIENT ADVOCACY SYMPOSIUM ON BRAIN METASTASES HELD ON SUNDAY, 25 JUNE)
12:15pm METASTATIC BRAIN TUMOURS (PATIENT
Speakers: Nicole Wilmarth (US) Ballroom (Ballsaal), to 12:30pm ADVOCACY PERSPECTIVE – FEEDBACK FROM THE and Ralph DeVitto (US) InterContinental Hotel (15 mins) INTERNATIONAL PATIENT ADVOCACY SYMPOSIUM ON BRAIN METASTASES HELD ON SUNDAY, 25 JUNE)
12:30pm ASK THE EXPERT PANEL SESSION PANEL MEMBERS: Ballroom (Ballsaal), to 1:00pm
Georg Widhalm (Austria) InterContinental Hotel (30 mins)
All Summit participants The Parlor Restaurant to 2:30pm InterContinental Hotel (90 mins)
SESSION 3 – MASTERCLASSES (Concurrent)
LOCATION
2:30pm THE ESSENTIALS OF CREATING A SUPPORT Facilitators: Maureen Daniels Breakout Room: Main to 4:00pm GROUP FOR BRAIN TUMOUR PATIENTS (Canada) Ballroom Ballsaal, Section 1, (90 mins) Interactive learning session InterContinental Hotel
2:30pm POLICY RECOMMENDATIONS FOR CANCER Facilitators: Eskil Degsell Breakout Room: to 4:00pm CARE BASED ON MULTI-DISCIPLINARITY (Sweden)
Ballroom Ballsaal Johann Masterclass 2
Speaker: Richard Price (Belgium) Strauss Section 5, (90 mins) Interactive learning session InterContinental Hotel
2:30pm BRAIN TUMOUR CLINICAL TRIALS - Facilitators: Chris Tse Breakout Room: to 4:00pm ARE WE DOING IT RIGHT? (New Zealand)
Facilitator: Komal Syed Breakout Room: Main to 4:00pm POPULATIONS IN THE BRAIN TUMOUR (Pakistan) Ballroom (Ballsaal), Section 3 Masterclass 4 COMMUNITY: IMPROVING HEALTH LITERACY
Speakers: Brijesh Deshpande (India) InterContinental Hotel (90 mins) AND INEQUALITIES IN CARE
Irene Ngong (Cameroon), Christine Mungoshi (Zimbabwe) and Alexandra Diaz Alba (Mexico) Interactive learning session
2:30pm A DEEPER DIVE INTO MOLECULAR
Facilitators: Carol Kruchko (US) Breakout Room: to 4:00pm PROFILING OF BRAIN TUMOURS
Speaker: Tracy Batchelor (US) Main Ballroom (Ballsaal) Masterclass 5 Interactive learning session InterContinental Hotel (90 mins)
4:00pm COFFEE/TEA BREAK AND NETWORKING All Summit Participants Ballroom (Ballsaal) to 4:30pm Foyer, InterContinental Hotel
SESSION 4 - PLENARY LOCATION
Chair: Mary Ellen Maher (US) Ballroom (Ballsaal), InterContinental Hotel
4:30pm BRAIN TUMOUR-RELATED EPILEPSY:
Speaker: Martin Glas (Germany) Ballroom (Ballsaal), to 4:50pm CHALLENGES AND SOLUTIONS InterContinental Hotel (20 mins inc 5 mins Q&A)
4:50pm CLASSIFYING BRAIN TUMOURS:
Speaker: Henry Llewellyn (UK) Ballroom (Ballsaal), to 5:10pm A SOCIAL SCIENCE PERSPECTIVE InterContinental Hotel (20 mins inc 5 mins Q&A)
5:10pm BACK TO SCHOOL WITH A BRAIN TUMOUR -
Speaker: Chris Tse (New Zealand) Ballroom (Ballsaal), to 5:30pm AN INTRODUCTION TO BRAIN TUMOUR SUPPORT InterContinental Hotel (20 mins inc NEW ZEALAND’S EDUCATION GUIDE 5 mins Q&A)
5:30pm MEDICAL EXPERTS AND PATIENT ADVOCATES
Speakers: Komal Syed (Pakistan) Ballroom (Ballsaal), to 5:50pm COMING TOGETHER WITH ONE MISSION - and Ather Enam (Pakistan) InterContinental Hotel (20 mins inc the Pakistan Society of Neuro-Oncology 5 mins Q&A) and the Brain Tumour Foundation of Pakistan
5:55pm CHALLENGES OF A BRAIN TUMOUR
Speaker: Batchimeg Batchuluun Ballroom (Ballsaal), to 6:15pm DIAGNOSIS IN MONGOLIA (Mongolia) InterContinental Hotel (20 mins inc 5 mins Q&A)
EVENING AT LEISURE
DAY 3 - TUESDAY, 27TH JUNE 2023
SESSION 5 - PLENARY
9:00am REDUCING STRESS IN BRAIN TUMOUR PATIENTS
LOCATION
Chair: Rosemary Cashman Ballroom (Ballsaal), (Canada) InterContinental Hotel
Speaker: Noa Faaij Ballroom (Ballsaal), to 9:20am (The Netherlands) InterContinental Hotel (20 mins inc 5 mins Q&A)
9:20am THE UKRAINE CRISIS AND BRAIN
Speaker: Anna Uzlova Ballroom (Ballsaal), to 9:40am TUMOUR PATIENTS (Ukraine)
InterContinental Hotel (20 mins inc 5 mins Q&A)
9:40am RAISING AWARENESS OF THE CHALLENGES
Speaker: Hugh Adams (UK) Ballroom (Ballsaal), to 10:00am OF BRAIN TUMOURS THROUGH
InterContinental Hotel (20 mins inc COMMUNITY ENGAGEMENT 5 mins Q&A)
10:00am CREATING A WEEKEND RETREAT FOR
Speaker: Bec Mallett Ballroom (Ballsaal), to 10:20am BRAIN TUMOUR PATIENTS AND THEIR FAMILIES (Australia)
InterContinental Hotel (20 mins inc 5 mins Q&A)
10:20am WHAT CAN YOU DO FOR NEURO-ONCOLOGY
Speaker: Chas Haynes (US) Ballroom (Ballsaal), to 10:40am MEDICAL SOCIETIES AND WHAT CAN
InterContinental Hotel (20 mins inc THEY DO FOR YOU? 5 mins Q&A)
10:40am BRAIN TUMOUR PATIENT SUPPORT IN CHINA
Speaker: Chengcheng Guo Ballroom (Ballsaal), to 11:00am (China - pre-recorded) InterContinental Hotel (20 mins inc 5 mins Q&A)
11:00am COFFEE/TEA AND NETWORKING
All Summit participants Ballroom (Ballsaal), to 11:30am Foyer, InterContinental (30 mins) Hotel
SESSION 6 - WORKSHOPS (CONCURRENT) LOCATION
11:30am BUILDING SURVIVORSHIP PLANS FOR BRAIN
Facilitator: Jean Arzbaecher (US), Breakout Room: to 1:00pm TUMOUR PATIENTS AND FAMILIES
Speakers: Susan Chang (US), Ballroom Ballsaal Workshop 1 and Jack Latteur (Belgium) Johann Strauss (90 mins) Section 4, InterContinental Hotel
11:30am NEURO-REHABILITATION FOR
Facilitator: Tina Mitchell Skinner (UK), Breakout Room: to 1:00pm BRAIN TUMOUR PATIENTS
Speaker: Andreia Capela Ballroom Ballsaal Workshop 2 Marques (Portugal), Johann Strauss (90 mins) Section 5, InterContinental Hotel
11:30am PALLIATIVE AND END-OF-LIFE CARE FOR
Facilitators: Mary Lovely (US) and Breakout Room: to 1:00pm ADULT AND PEDIATRIC BRAIN TUMOUR PATIENTS and Anita Granero (Italy/France) Ballroom Ballsaal Workshop 3
Speakers: Christine Marosi (Austria) Johann Strauss (90 mins) and Ulrike Leiss (Austria) Section 6, InterContinental Hotel
11:30am DOCTOR/PATIENT COMMUNICATION INCLUDING
Facilitator: Fiona Keegan (Ireland) Breakout Room: to 1:00pm MASTERING THE ART OF SHARED DECISION- Speakers: Guy Buyens (Belgium) Main Ballroom Workshop 4 MAKING AND SEEKING A SECOND OPINION and Ana Arnaut (Croatia) (Ballsaal) (60 mins)
InterContinental Hotel
1:00pm LUNCH BREAK AND NETWORKING
All Summit Participants The Parlor Restaurant to 2:10pm InterContinental Hotel (70 mins)
SESSION 7 - PLENARY
2:10pm GETTING BACK TO WORK
LOCATION
Co-Chair: Anita Granero Ballroom (Ballsaal), (Italy/France) InterContinental Hotel
Speaker: Veronica Foote (UK), Ballroom (Ballsaal), to 2:30pm WITH A BRAIN TUMOUR
InterContinental Hotel (20 mins inc Q&A)
2:30pm THE RAYMOND A WOOD FOUNDATION:
Speaker: Amy Wood (USA) Ballroom (Ballsaal), to 2:50pm A NOVEL APPROACH TO SUPPORTING YOUNG
InterContinental Hotel (20 mins inc Q&A) PATIENTS WITH HYPOTHALAMIC PITUITARY BRAIN TUMOURS
2:50pm PEDIATRIC BRAIN TUMOURS AND THE WORK
Speaker: Anita Kienesberger Ballroom (Ballsaal), to 3:10pm OF CHILDHOOD CANCER INTERNATIONAL (Austria)
InterContinental Hotel (20 mins inc Q&A)
3:10pm GEMEINSAM GEGEN GLIOBLASTOM
Speaker: Martin Glas Ballroom (Ballsaal), to 3:30pm (TOGETHER AGAINST GLIOBLASTOMA) (Germany) InterContinental Hotel (20 mins inc Q&A)
3:30pm THE WORK OF THE BRAIN TUMOUR
Speaker: Dr Minda Okemwa Ballroom (Ballsaal), to 3:50pm ASSOCIATION OF KENYA (Kenya) InterContinental Hotel (20 mins inc Q&A)
4:00pm COFFEE/TEA BREAK AND NETWORKING
All Summit Participants Ballroom (Balsaal) to 4:30pm Foyer (30 mins)
SESSION 8 - PLENARY
4:30pm to AN INTRODUCTION TO THE WORK OF THE
InterContinental Hotel
LOCATION
Chairs: Kathy Oliver (UK) Ballroom (Balsaal) InterContinental Hotel
Speaker: Ahmed Idbaih (France) Ballroom (Balsaal)
4:50pm EUROPEAN REFERENCE NETWORK (ERN EURACAN) InterContinental Hotel (20 mins inc Q&A) for brain tumours and how cross-border collaboration is reshaping neuro-oncology care in Europe
4:50pm to A BIRD’S EYE VIEW OF THE INTERNATIONAL
Speaker: Kathy Oliver (UK) Ballroom (Balsaal)
5:10pm BRAIN TUMOUR PATIENT ADVOCACY COMMUNITY InterContinental Hotel (20 mins inc Q&A) and building pragmatic, impactful international collaboration between brain tumour patient organisations and others
7:30pm OFFICIAL IBTA WORLD SUMMIT PHOTOGRAPH
All Summit Participants Salons Vier, to 10:00pm (meet in hotel lobby at 7:30 pm) Jahreszeiten and Kaunitz, AND SUMMIT DINNER (starting at 8:00 pm) InterContinental Hotel
DAY 4 - WEDNESDAY, 28TH JUNE 2023
SESSION 9 - PLENARY LOCATION
Chairs: Melissa Lim (Singapore) Ballroom (Balsaal) InterContinental Hotel
9:00am THE OCEAN AND SKY CHILDREN’S HOSPICE
Speaker: Hisato Tagawa Ballroom (Balsaal) to 9:20am IN YOKOHAMA, JAPAN (Japan – pre-recorded) InterContinental Hotel (20 mins inc 5 min Q&A)
9:20am TOP TIPS ON STARTING A BRAIN TUMOUR
Speaker: Carol Kruchko (US) Ballroom (Balsaal) to 9:40am PATIENT REGISTRY IN YOUR COUNTRY - InterContinental Hotel (20 mins inc LEARNINGS FROM THE CENTRAL BRAIN 5 min Q&A) TUMOR REGISTRY OF THE UNITED STATES (CBTRUS)
SESSION 10 - PLENARY
9:50am ETHICAL CHALLENGES IN TREATING BRAIN
LOCATION
Moderator: Maureen Daniels Ballroom (Balsaal) (Canada) InterContinental Hotel
Speaker: Christine Marosi (Austria) Ballroom (Balsaal) to 10:10am TUMOUR PATIENTS InterContinental Hotel (20 mins inc 5 min Q&A)
10:15am IMPROVING CARE AND OUTCOMES FOR Speaker: Kimberly Wallgren (US) Ballroom (Balsaal) to 10:35am PEOPLE WITH EPENDYMOMA: A CASE STUDY
InterContinental Hotel (20 mins inc ABOUT THE IMPORTANCE OF LEVERAGE 5 min Q&A) IN NONPROFIT STRATEGY
10:40am COFFEE/TEA BREAK AND NETWORKING
All Summit participants Ballroom (Ballsaal) to 11:10am Foyer, InterContinental Hotel (30 mins)
SESSION 11 - PANEL/AUDIENCE DISCUSSION:
11:15am BRAIN TUMOUR RESEARCH:
LOCATION
Moderator: Helen Bulbeck (UK) Ballroom (Balsaal) InterContinental Hotel
PANELLISTS: Ballroom (Ballsaal) to 12:15pm BARRIERS AND SOLUTIONS
Matthias Preusser (Austria) InterContinental Hotel (60 mins)
Gaetano Finocchiaro (Italy)
David Jenkinson (United Kingdom)
Eskil Degsell (Sweden)
12:15pm CLOSING REMARKS
Kathy Oliver (UK) Ballroom (Ballsaal) to 12:30pm InterContinental Hotel (15 mins)
12:30pm LUNCH PROVIDED AT THE INTERCONTINENTAL
All Summit participants The Parlor Restaurant, to 1:30pm HOTEL FOR ALL SUMMIT PARTICIPANTS InterContinental Hotel (60 mins)
2:00pm END OF IBTA SUMMIT AND DEPARTURES
SIDE MEETING (for IBTA Advisors only)
12:30pm IBTA Advisors Meeting (working lunch)
All IBTA Advisors to 1:30pm (60 mins)
LOCATION
IBTA Summit Office, InterContinental Hotel
Executive Summary
The fifth biennial World Summit of Brain Tumour Patient Advocates, organised by the International Brain Tumour Alliance (IBTA) convened in June 2023 in Vienna, Austria to address the critical and unmet needs of brain tumour patients and their families. Brain tumours are a subset of rare cancers that face significant research and development challenges due to a range of scientific and commercial reasons. The Summit served as a platform where brain tumour patient advocates, healthcare professionals, patients, caregivers, industry representatives, medical societies and others came together to seek solutions and foster advancements in the field.
The overarching message conveyed was that each brain tumour diagnosis encompasses not only a medical battle but also a deeply personal narrative. Families and patients faced with a life-changing diagnosis and the realisation that there are not enough resources dedicated to brain tumours, are driven to become advocates for research, treatment, and support, despite the multifaceted impact of the disease on their lives.
The Summit’s focus areas included the urgent quest for improved screening, diagnosis techniques, expanded treatment options, more effective and less toxic therapies, and enhanced psychosocial support.
These areas of unmet need span across disciplines such as epidemiology, pathology, diagnostics, treatments and pharmaceutical innovations. However, notable strides in medical science were also highlighted during the discussions, including
advances in neurosurgery, radiotherapy, devices, and systemic therapies. Surgical techniques showcased breakthroughs in precision and minimally invasive procedures, while radiotherapy innovations promised targeted treatment with reduced side effects. The encouraging developments in systemic therapies, particularly the advent of targeted therapies, were underscored with specific examples. Molecular classification techniques were showcased as pivotal in tailoring treatments to individual patients, resulting in higher treatment efficacy and fewer adverse effects.
Members of the IBTA’s senior advisory board were present at the World Summit of Brain Tumour Patient Advocates in Vienna in June 2023.
Personal stories shared during the Summit provided poignant insights into the challenges faced by brain tumour patients and their families. Amid the isolation and emotional upheaval, these stories served as inspirations of resilience, prompting many to transform their struggles into initiatives that empower fellow patients and caregivers. The determination and dedication of healthcare professionals to advance research and foster collaboration were evident throughout the Summit, emphasising the critical role of a comprehensive, multidisciplinary support system for those affected by brain tumours.
A central theme at the Summit was the influential role of patient advocates, transcending age barriers. Patient experts and advocates, including children, emerged as pivotal drivers of change. Their voices not only influence research priorities but also infuse a sense of hope into the community. The Summit’s discussions laid a robust groundwork for future collaborative endeavours, underscoring the significance of international cooperation in advancing research, prioritising patient-centred studies, and expanding global support networks.
Melissa Lim (left) from Brain Tumour Society (Singapore) and Anita Granero (right) from Oscar’s Angels which is based in France and Italy attended the IBTA Summit.
Participants at the IBTA’s fifth Biennial World Summit of Brain Tumour Patient Advocates, Vienna, 2023, came from 33 countries.
DAY ONE
Monday 26 June 2023
PLENARY SESSION 1
Chair: Kathy Oliver, International Brain Tumour Alliance (IBTA), United Kingdom
Welcome Address
Speaker: Kathy Oliver - International Brain Tumour Alliance (IBTA), United Kingdom
Introduction
The 5th Biennial World Summit of Brain Tumour Patient Advocates commenced with a warm welcome from Kathy Oliver, Chair of the International Brain Tumour Alliance. The Summit, held in the beautiful city of Vienna, Austria, aimed to bring together individuals from various countries and backgrounds to collaborate, share knowledge, and work towards significantly improving outcomes for brain tumour patients. Kathy Oliver’s opening address emphasised the importance of collaboration, inclusivity, and fostering a spirit of hope in the field of brain tumour research and patient advocacy.
Attendees and diversity
Kathy Oliver acknowledged the over 100 attendees representing 33 countries and five continents, consisting of a diverse group of professionals and patient advocates dedicated to the cause. She stressed the significance of in-person introductions in Vienna: putting faces to names would help foster a deeper understanding and better collaboration among the participants. The Summit showcased an exceptional global representation, with a delegate from Mongolia participating for the first time and others from Ukraine attending, who had overcome challenging journeys from their home country to attend.
Collaboration and hope
The IBTA Chair expressed her optimism about the current state of brain tumour research and neuro-oncology, citing that there is more hope than ever before, due to the recent advancements in treatments and surgical approaches. She highlighted the collective dream shared by all attendees - to enhance the lives of brain tumour patients through collaboration, knowledge sharing, and maintaining a sense of hope. By cultivating unity and encouraging joint efforts, attendees aim to improve the lives of those affected by brain tumours and their caregivers.
Networking and professional engagement
Kathy Oliver encouraged all attendees to take full advantage of the networking opportunities offered during the Summit. She emphasised the diverse array of professionals present, including neurosurgeons, pathologists, radiation oncologists, neurooncologists, and nurses, among others. Attendees were encouraged to exchange contact information and materials, fostering new connections that would prove beneficial in their respective fields and patient advocacy efforts.
Kathy Oliver, Chair and Co-Director of the International Brain Tumour Alliance (IBTA) welcomes everyone to the Summit on Day One.
Simone Silenzi from Gruppo Italia Glioblastoma Multiforme cancro al cervello in Italy capturing a moment in the Summit for posterity.
Inclusivity and language
She reassured non-English speakers that language barriers should not hinder active participation in the Summit. She highlighted the understanding and acceptance among participants, emphasising that there were no “stupid questions.” Attendees were encouraged to ask for clarifications and engage actively in discussions, regardless of language proficiency.
Empowerment of advocates
The Chair acknowledged the presence of fantastic advocates who had already made significant contributions in the field of brain tumour patient advocacy. She urged these experienced advocates to share their insights with those who were just beginning their journey in advocacy. Attendees were encouraged to seek out countries where patients faced significant difficulties in diagnosis and treatment, offering support and materials to improve these challenging situations.
Conclusion
Kathy Oliver’s welcome address set the tone for the 5th Biennial World Summit of Brain Tumour Patient Advocates, emphasising the importance of collaboration, inclusivity, and hope in achieving positive outcomes for brain tumour patients worldwide. The Summit provided a unique platform for diverse professionals and advocates to exchange knowledge, ideas, and experiences, ultimately working together towards a better future for those affected by brain tumours. The commitment and passion displayed by all attendees were a testament to the dedication of the brain tumour community in making a difference in the lives of patients, their families, and caregivers.
IBTA Chair Kathy Oliver encouraged all Summit participants to interact with speakers by asking questions, networking and exchanging information.
Innovative surgical approaches to brain and CNS tumours
Speaker: Mag. Dr Friedrich Erhart, Department of Neurosurgery, Medical University of Vienna, Austria
Key points
■ The presentation emphasised advancements in tumour visualisation, resection margin optimisation, and surgical precision for improved results.
■ Diverse brain tumour entities were discussed, with histological research playing a crucial role in determining appropriate treatment strategies.
■ Fluorescence-guided surgery (FGS) using 5-ALA (5-aminolevulinic acid) was introduced. This fluorescent dye enhances tumour tissue visibility during brain surgery, aiding neurosurgeons in more precise resection while preserving brain function.
■ 5-ALA technology correlates with tumour density, vessel density, and histological characteristics, providing insights into tumour biology and improving patient survival.
■ Intraoperative MRI was discussed as a tool for real-time evaluation and optimisation of resection margins, leading to improved patient survival outcomes compared to conventional surgery.
■ A case study exemplified the application of various imaging technologies, including functional MRI, DTI imaging, and 3D model MRI, for precise localisation of brain functions before surgery.
■ Raman histology provides real-time tissue analysis during
surgery, aiding in distinguishing tumour tissue from healthy brain tissue.
■ The potential of artificial intelligence (AI) in surgical decision-making was highlighted, as AI algorithms can differentiate between tumour and healthy tissue, enhancing surgical precision.
Friedrich Erhart, from the Medical University of Vienna, delivered a comprehensive presentation on the latest innovative surgical approaches for brain tumour operations. The presentation highlighted cutting-edge technologies that improve patient outcomes through enhanced tumour visualisation, optimised resection margins, and increased precision during surgery. He emphasised the importance of combining advanced surgical techniques with other diagnostic tools, and multidisciplinary collaboration to achieve successful outcomes for brain tumour patients.
Friedrich Erhart began by discussing the diversity of brain tumour entities, with the majority being non-malignant, and approximately 25% to 33% being malignant. Histological research plays a crucial role in confirming the nature of brain tumours, making it essential in determining the appropriate course of action for each patient.
The presenter introduced the audience to fluorescence-guided surgery (FGS) using 5-ALA (5-aminolevulinic acid) a fluorescent dye swallowed by patients prior to neurosurgery that highlights tumour tissue, making it more distinguishable from normal brain tissue. By using this technology, neurosurgeons can visualise tumour boundaries more clearly during surgery, aiding in achieving maximum resection while preserving essential brain functions. Studies have shown that 5-ALA technology improves patient survival, and it correlates with tumour density, vessel density, and histological characteristics, providing valuable insights into tumour biology.
Friedrich Erhart presented a case illustrating the application of 5-ALA in a patient with a suspected left temporal glioma. The surgical video showed the significance of 5-ALA in distinguishing tumour tissue from healthy brain tissue, ultimately leading to the accurate diagnosis of a WHO grade 3 high-grade glioma.
The use of intraoperative MRI during neurosurgery was discussed, aiming to evaluate and optimise resection margins. This advanced technology allows for real-time assessment of the surgical site, ensuring a more precise resection. Friedrich Erhart emphasised that using intraoperative MRI has shown to improve patient survival compared to conventional surgery.
The speaker presented a case of a patient with a recurrent left frontal insular lesion. He demonstrated the use of various imaging technologies, including functional MRI, DTI imaging, and 3D model MRI, to ensure precise localisation of critical brain functions before surgery. The intraoperative MRI allowed for immediate assessment and refinement of resection margins, ultimately contributing to better surgical outcomes.
He introduced Raman histology as an emerging technology that provides additional information about tissue composition during surgery. By measuring the scattering of light, Raman imaging allows for real-time tissue analysis, closely correlating with conventional
Mag Dr Friedrich Erhart is a neurosurgeon from the Medical University of Vienna.
histology. This new tool promises to enhance the ability to distinguish tumour tissue from normal brain tissue, guiding surgical decisions for better patient outcomes.
The potential of artificial intelligence (AI) in aiding surgical decision-making was highlighted. AI algorithms can automatically interpret tissue samples and assist neurosurgeons in differentiating between tumour and healthy tissue. Implementing AI in future surgical procedures can significantly enhance surgical precision and outcomes.
Dr Friedrich Erhart’s presentation showcased the latest innovations in surgical approaches for brain and CNS tumours. The integration of technologies such as fluorescence-guided surgery using 5-ALA, intraoperative MRI, and Raman histology demonstrated their potential to improve surgical outcomes and enhance patient survival. The importance of multidisciplinary collaboration and the ongoing research on AI highlighted the promising future of brain tumour surgery. These advancements pave the way for better treatment strategies, ultimately improving the lives of brain tumour patients worldwide.
Update on radiotherapy for brain and CNS tumours
Speaker: Dr Carola Lutgendorf-Caucig, MedAustron, Vienna, Austria
Carola Lutgendorf-Caucig from Med Austron in Vienna gave a fascinating overview of current radiation practice for brain tumours.
Key points
■ Radiotherapy employs radiation to control or destroy malignant cancer cells while minimising damage to healthy tissue and by damaging DNA through ionising radiation.
■ Current standards of care include X-ray or photon-based radiation, together with newer technologies like proton-based radiotherapy, 3D conformal stereotactic radiosurgery, gamma knife, and ion therapy.
■ Photons and X-rays induce cell damage through an indirect ionisation process involving oxygen and free radical production. Protons share a similar biological mechanism but behave differently.
■ Protons stop at a specific depth, enabling better dose distribution within the tumour, unlike photons that can pass beyond a tumour and continue through the body.
■ Treatment planning relies on surgeon reports, pathology data, imaging, and clinical information to define target volume and plan treatment.
■ Pathology reports guide the delineation of the clinical target volume (CTV) around the visible tumour, expanded to account for potential microscopic disease.
■ CT scans aid treatment planning for photon-based radiotherapy, while proton therapy is preferred in paediatric patients to minimise radiation exposure to normal (still growing) tissues.
Dr Erhart, speaking to a packed house, delivered a comprehensive presentation on the latest innovative surgical approaches for brain tumours.
Dr
■ Treatments include photon-based 3D conformal techniques and advanced volumetric modulated therapy (VMAT), which offers highly conformal dose distribution.
■ Proton therapy shows promise, particularly in paediatrics, reducing radiation exposure to normal tissues and potentially improving long-term outcomes.
■ Carbon ion therapy is used for challenging macroscopic diseases, and research.
■ Emerging technology, flash radiotherapy, delivers ultrahigh radiation doses per second, potentially reducing tissue toxicity while maintaining tumour control.
■ Treatment modality choice is patient and situationdependent, considering factors such as tumour characteristics and patient status.
Radiotherapy has been a crucial component of cancer care for brain tumours and other malignancies. While the history of cancer surgery dates back many centuries, radiation oncology emerged in the late 19th century. Chemotherapy was introduced during World War II, and in the 1990s, targeted therapies and immunotherapies showed promise in cancer treatment, including for brain tumours.
Radiotherapy involves the medical use of radiation to control or kill malignant cancer cells while minimising damage to surrounding healthy tissue. Ionising radiation damages DNA, leading to cell death or other cellular changes. The standard of care currently includes X-ray or photon-based radiation. Newer technologies like protonbased radiotherapy, 3D conformal stereotactic radiosurgery, gamma knife, and ion therapy with protons are also utilised.
The key difference between photons and X-rays lies in their indirect ionisation process, where oxygen in the tissue leads to cell damage via free radical production. Protons have a similar biological mechanism, but the main difference is their physical behaviour. Photons pass through the body, while protons stop at a specific depth, allowing for a better dose distribution within the tumour and less risk of collateral effect. Radiotherapy treatment planning is essential since radiation oncologists do not directly see the tumour. They rely on surgical and pathology reports, along with imaging and clinical information, to define the target volume and plan the treatment.
Pathology reports provide critical information about the tumour’s location and characteristics, allowing for the delineation of the clinical target volume (CTV) around the visible tumour. The CTV must be expanded to account for potential microscopic disease and to ensure comprehensive treatment.
The treatment plannin Sg typically involves a CT scan for photonbased radiotherapy due to its X-ray-based nature, which helps determine optimal energy and dose distribution. Proton therapy is also used, especially in paediatric cancer patients, as it can spare normal tissue from unnecessary radiation exposure.
External beam radiotherapy using photon-based 3D conformal
techniques has been the standard treatment, shaping the radiation beam to match the target profile. Volumetric modulated therapy (VMAT) is a more advanced technique that rotates the radiotherapy machine gantry around the patient, allowing for highly conformal dose distribution.
Carbon ion therapy is another form of charged particle therapy, larger than protons, and can be used for research and treatment of macroscopic diseases with difficult-to-achieve local control.
A cutting-edge emerging technology is flash radiotherapy, which delivers ultra-high doses of radiation per second, reducing normal tissue toxicity while maintaining tumour control. Its underlying mechanism is not fully understood, and extensive research is ongoing to explore its potential benefits.
In conclusion, radiotherapy has evolved significantly since the 1990s, moving from 2D and 3D conformal techniques to more sophisticated modalities like proton therapy and flash radiotherapy. The choice of treatment modality should always be patientdependent and situation-dependent, considering factors such as tumour location, size, and patient status. With continuous advancements in radiation technologies, the goal remains to achieve better conformality, improved tumour control, and reduced long-term side effects for cancer patients.
PLENARY SESSION 2
Chair: Kathy Oliver, International Brain Tumour Alliance (IBTA), United Kingdom
The molecular era –update on the WHO 2021 Classification of Brain and
CNS Tumours
Speaker: Dr Susan Chang, MD, University of California, San Francisco (UCSF), United States
Dr Susan Chang gave a clear, high-level overview of the WHO 2021 update on the Classification of Brain and CNS tumours.
Key points
■ Overview of the 2021 WHO Classification of Brain and Central Nervous System (CNS) Tumours
■ The 2021 WHO Classification improves tumour characterisation by incorporating molecular and genomic features.
■ Classification is crucial for appropriate patient care and management.
■ Differentiation between astrocytic tumour grades (e.g., grade 3 and grade 4) based on genetic markers.
■ Implications for clinical trials and treatment selection.
■ Targeted therapies and personalised treatment: understanding specific genetic abnormalities in tumours (e.g. IDH mutation and BRAF mutation) allowed for the development of inhibitors that target these mutations.
Dr Susan Chang’s presentation provided a high-level overview of the 2021 WHO Classification of Brain and Central Nervous System (CNS) Tumours. She pointed out that other presentations would delve into the molecular and genetic characteristics in more detail, including insights from neuropathologists.
Brain and CNS tumours constitute a highly diverse group, arising from various cell types within the brain. The classification and diagnosis of these tumours are essential for appropriate patient care and management. Susan Chang presented the case of a 50-year-old patient with a large brain mass and emphasised the importance of tissue confirmation to distinguish between different causes of brain masses, such as tumours, abscesses, and inflammation.
She discussed the historical evolution of tumour classification systems, with the 2021 WHO Classification being the most recent and comprehensive version. Traditionally, tumour diagnosis relied heavily on histology, which could be subjective and led to varying interpretations among pathologists. Moreover, some tumours exhibited mixed features, making accurate classification challenging. However, the understanding of brain tumour biology has significantly advanced, and the importance of genetic and molecular markers in tumour diagnosis has become evident. One of the critical discoveries is the IDH mutation, which has revolutionised the classification of gliomas. The presence or absence of this mutation significantly influences the prognosis and treatment approach.
The update also highlights the differentiation between different grades of astrocytic tumours, such as grade 3 and grade 4 gliomas. The presence of certain genetic markers may define a tumour as a glioblastoma, even if it lacks classic histological features. This differentiation has implications for clinical trials and treatment selection.
Susan Chang emphasised the importance of understanding the specific genetic abnormalities in tumours, as this knowledge allows for targeted therapy. For example, IDH inhibitors have shown promise in low-grade gliomas with IDH mutations. Similarly, targeting BRAF mutations in certain tumours, (for example, melanoma), has proven effective.
In conclusion, the 2021 WHO Classification of Brain and CNS Tumours has improved tumour characterisation, incorporating molecular and genomic features to better define them. This advancement provides more reliable information on clinical outcomes, aids in personalised drug development, and facilitates the enrolment of patients with uniform diagnoses in clinical trials, to assess treatment effectiveness more accurately. The understanding of tumour biology and genetics is transforming brain tumour
diagnosis and treatment, offering hope for improved patient outcomes in the molecular era.
Update on currently available systemic treatment approaches for low-grade and high-grade brain tumours
Speaker: Univ.-Prof. Dr Matthias Preusser, Clinical Division of Oncology, University of Vienna, Austria
Professor Dr Matthias Preusser of the University of Vienna has been a wonderful supporter of the IBTA’s work and, at the IBTA Summit, gave a talk on currently available systemic treatments for low-grade and high-grade brain tumours.
Key points
■ Overview of the guidelines of the European Association of Neuro-Oncology (EANO).
■ Low-grade gliomas:
• Need for chemotherapy or radiation therapy in most cases of low-grade gliomas.
• Significance of the IDH mutation found in these tumours.
• Exciting results from a global study of the IDH inhibitor vorasidenib demonstrating a 61% reduction in tumour recurrence risk, and increased progression-free survival for low-risk patients.
■ Glioblastoma treatment approach:
• Current treatment approach involves surgery, radiotherapy, and chemotherapy.
• Potential use of IDH inhibitors for glioblastoma, although not routine yet.
• Recurrence management lacks defined protocols.
• LEGATO trial aims to define a new therapeutic standard for glioblastoma treatment.
■ Challenges and clinical trials:
• Treating glioblastoma remains challenging.
• Patients are often offered participation in clinical trials to explore new treatments.
• Potential of immunotherapy for glioblastoma, citing ongoing research.
• Complexity of glioblastoma, difficulty in finding effective immune-boosting strategies.
• Combination treatments and research:
• Glioma presents unique challenges for combining older chemotherapy drugs with newer targeted treatments.
• Ongoing research to discover more effective systemic treatment approaches for both low-grade and high-grade brain tumours.
Univ.-Prof. Dr Matthias Preusser delivered an informative presentation on systemic treatment approaches for brain tumours, with a focus on low-grade glioma and glioblastoma. He referred to the guidelines of the European Association of Neuro-Oncology (EANO).
Low-grade gliomas were discussed first, emphasising the need for chemotherapy or radiation therapy in most cases, either immediately after surgery or later. Matthias Preusser highlighted the significance of the IDH mutation found in every cell of these tumours. Targeting this mutation could allow selective treatment of tumour cells while sparing healthy cells, a crucial goal in oncology. Exciting results were presented from a global study of an IDH inhibitor drug called vorasidenib, demonstrating a 61% reduction in tumour recurrence risk and a significant increase in progression-free survival for low-risk patients.
However, some questions remain about the drug’s effectiveness in grade 3 and grade 4 brain tumours and its potential interaction with other treatments like radiation and chemotherapy. Despite these uncertainties, the results are promising, and regulatory authorities are likely to review the drug for approval in the near future.
Moving on to glioblastoma, the most common and malignant brain tumour, Matthias Preusser discussed the current treatment
Dr Susan Chang confers with Chris Tse of Brain Tumour Support NZ.
approach involving surgery, radiotherapy, and concomitant chemotherapy. He also mentioned the potential use of IDH inhibitors for glioblastoma, although it is not yet routine practice. Regarding recurrence, current evidence does not yet allow us to define a protocol. He mentioned the LEGATO trial (lomustine with or without re-irradiation for first progression of glioblastoma: a randomised phase III study) that hopes to define a new therapeutic standard for the treatment of glioblastoma.
Novel therapeutics for primary malignant brain tumours
Speaker: Professor Tracy Batchelor, Harvard Medical School, and Brigham and Women’s Hospital, Boston, United States
Professor Preusser acknowledged that treating glioblastoma remains challenging, and patients are often offered participation in clinical trials to explore new treatments and advance knowledge in the field.
Matthias Preusser touched on the potential of immunotherapy for glioblastoma, citing ongoing research in the area. However, he also emphasised the complexity of glioblastoma and the difficulty in finding effective immune-boosting strategies.
Regarding the combination of older chemotherapy drugs with newer targeted treatments, it was acknowledged that glioma presents unique challenges. Nevertheless, research continues to discover more effective systemic treatment approaches for both lowgrade and high-grade brain tumours.
In conclusion, Matthias Preusser’s presentation provided valuable insights into the evolving landscape of systemic treatments for brain tumours, with a particular focus on the exciting prospects of IDH inhibitors for low-grade gliomas, and ongoing research into immunotherapies for glioblastoma. As research progresses, it is hoped that these systemic therapies will lead to improved outcomes and quality of life for patients with brain tumours.
Professor Tracy Batchelor spoke about novel therapies for malignant brain tumours focussing on targeted therapies, immunotherapies, and molecularly defined subsets of glioblastoma.
Key points
■ There is significant progress in novel therapeutics for brain tumours, especially in targeted therapies.
■ There are six approved targeted therapies in neurooncology, with more in the pipeline.
■ Tovorafenib is promising for paediatric astrocytoma, showing tumour shrinkage in trials.
Two of the focus points of Professor Preusser’s presentation at the IBTA Summit were on IDH inhibitors for low-grade gliomas and ongoing research into immunotherapies for glioblastoma.
Pia Riis Olson (left) of the Danish Brain Tumour Association and Amber Barbach (right), of the Glioblastoma Research Organisation in the United States.
■ IDH1 inhibitors have been identified through immunohistochemical staining.
■ Cancer neuroscience is exploring neuron-cancer cell interactions, with the potential for targeting neurotransmitters.
■ Immunotherapies for nervous system tumours, include CAR T cells for CNS lymphomas.
■ There is an emphasis on drug design, combination therapies, overcoming resistance, and blood-brain barrier challenges.
The presentation by Professor Tracy Batchelor focused on novel therapeutics for primary malignant brain tumours, with an emphasis on targeted therapies, immunotherapies, and molecularly defined subsets of glioblastoma.
Tracy Batchelor began by highlighting the significant progress made in developing novel therapeutics for malignant brain tumours, especially in targeted therapies. He shared a diagram illustrating the complexity of cancer cell pathways, which have now become legitimate targets for drug development. He informed the Summit participants about six approved targeted therapies in neurooncology, with five approvals since 2018, and four additional targeted oral drugs currently undergoing FDA registration studies. The presentation delved into specific targeted therapies for paediatric low-grade astrocytoma, highlighting tovorafenib as a promising drug that specifically targets RAF in paediatric astrocytoma. Clinical trials have shown encouraging results with tumour shrinkage in a significant number of patients.
IDH1 inhibitors, another significant area of research, were discussed briefly. Tracy Batchelor emphasised the importance of detecting IDH mutations using a simple immunohistochemical staining, making it a practical screening method for initial assessments.
A novel area of interest presented in the talk was cancer
neuroscience, which explores the relationship between neuronal inputs and brain cancers. It was demonstrated that cancer cells cluster around neurons, and the electrical interactions between them play a crucial role in tumour growth and survival. Targeting neurotransmitters like glutamate is a potential therapeutic avenue to slow or stop tumour growth.
The presentation also touched upon immunotherapies for nervous system tumours. While some FDA-approved immunotherapies exist for rare conditions, more research is needed to improve their effectiveness for primary brain tumours. CAR-T cells show promise in CNS lymphomas, offering a potential avenue for effective treatment.
In conclusion, Professor Tracy Batchelor highlighted the significant advancements in understanding oncogenic pathways driving nervous system tumours, and the improved design of drugs facilitated by modern medicinal chemistry and artificial intelligence. He emphasised the growing list of approved and pipeline oral targeted drugs, the need for combination therapies, and overcoming resistance and the blood-brain barrier. Tracy Batchelor also underscored the challenges in immunotherapy for primary brain tumours but expressed optimism regarding the potential of CAR-T cells for CNS lymphomas.
Overall, the presentation provided a comprehensive and hopeful overview of novel therapeutics for primary malignant brain tumours, illustrating the progress made in targeted therapies and the promise of immunotherapies and molecularly defined subsets of glioblastoma.
The audience at the IBTA World Summit listened intently as Professor Batchelor confirmed that there is significant progress in novel therapeutics for brain tumours, especially in targeted therapies.
Advancements in brain and CNS tumour pathology: a neuro-pathologist’s perspective
Speaker: Dr Adelheid Woehrer, Institute of Neurology, Medical University of Vienna, Austria
Dr Adelheid Woehrer is a neuro-pathologist at the Medical University of Vienna.
Key points
■ Brain tumours are relatively rare compared to other cancer types.
■ The brain’s complexity results in over 120 different types of brain tumours.
■ Classification of brain tumours has shifted from morphology to molecular markers.
■ DNA methylation profiling is crucial for accurate classification.
■ IDH mutation serves as a treatment target for gliomas.
■ AI-driven algorithms aid pathologists in diagnosis and treatment decisions.
■ Nanopore sequencing offers rapid and comprehensive molecular diagnosis.
■ Understanding molecular characteristics improves patient care and outcomes.
Adelheid Woehrer covered various aspects of brain tumour pathology in her presentation, including the incidence rates of brain tumours and their significance in comparison to other cancer types. She highlighted the unique challenges faced in classifying brain tumours and the ground-breaking advancements in molecular diagnostics and technological tools that have revolutionised the field.
Brain tumours are relatively rare in comparison to other cancer types, such as lung, prostate, breast, and colorectal cancers, which have higher incidence rates. Developed countries experience higher rates of brain tumours due to factors like aging populations. However, the diverse and complex nature of the brain, with its vast number of neurons and glial cells, contributes to the existence of over 120 different types of brain tumours. This diversity presents significant challenges in accurately diagnosing and characterising these tumours.
Over the years, brain tumour classification has evolved from a morphological approach to one that integrates molecular markers, becoming a cornerstone of cancer diagnostics. These advancements have been driven by technological breakthroughs in gene sequencing and DNA methylation profiling.
Gene sequencing techniques have progressed beyond singlegene analysis to simultaneous examination of multiple genes. However, Adelheid Woehrer highlighted the significance of DNA methylation profiling, an epigenetic marker that remains stable and heritable across cell generations. DNA methylation profiles provide insights into tumour cell origins, facilitating more accurate and reliable classification. Advanced platforms for DNA methylation profiling have simplified the process and improved neuropathologists’ diagnostic capabilities.
Dr Woehrer emphasises the importance of screening for treatment targets in brain tumours. For instance, the IDH mutation serves as an exciting treatment opportunity for gliomas. Although some tumours have limited treatment targets today, the identification of these targets is crucial, as they may provide a lifeline for patients with limited options. The report suggests that beyond genomic screening, examining different molecular layers (DNA, gene expression, and epigenetics) and observing cell response to treatment are potential avenues for future research.
The advent of artificial intelligence (AI) has opened new possibilities in pathology. AI-based algorithms can support pathologists in making diagnoses, suggesting potential classifications, and detecting complex patterns in medical images. By identifying predictive markers that alter cell phenotypes, AI can guide treatment decisions, ultimately improving patient outcomes.
Adelheid Woehrer introduced an emerging technology known as nanopore sequencing. This handheld device uses membranes and pores to rapidly sequence DNA fragments, providing a comprehensive molecular integrated diagnosis within hours. Nanopore sequencing shows promise for analysing copy number alterations, mutations, and DNA methylation patterns, making it an attractive option for smaller laboratories and developing countries.
In conclusion, this presentation provided a comprehensive overview of the current state of brain and CNS tumour pathology. Understanding the molecular and genetic characteristics of brain tumours will continue to drive progress in the field and contribute to improved patient care and treatment outcomes.
Report on metastatic brain tumours: clinical perspective
Summary and feedback from the International Patient Advocacy Symposium on Brain Metastases 25 June 2023 (run by the International Brain Tumour Alliance in collaboration with the American Brain Tumor Association)
Speaker: Dr Manmeet Alhuwalia, Miami Cancer Institute, United States
Key points
■ Brain metastases are more common than primary malignant brain tumours.
■ Lung, breast, and melanoma cancers commonly metastasise to the brain.
■ Recent advancements in medical interventions have improved survival rates in primary cancers. In turn, longer patient survival contributes to the increased incidence of brain metastases.
■ Improved diagnostic techniques, like brain MRIs, aid in detection of brain metastases.
■ Advocacy is important for appropriate screening measures.
■ Treatment options have expanded to include targeted therapies and immunotherapies.
■ Collaboration among specialists is key for comprehensive treatment.
■ Combination therapies, including radiosurgery and immunotherapy, show promise.
■ Genomic profiling predicts the likelihood of brain metastases.
■ Non-invasive methods to disrupt the blood-brain barrier enhance drug delivery.
■ Clinical trials, multidisciplinary care, and neurocognitive testing are vital.
■ Global initiatives and collaboration advance research and treatment strategies.
Day One of the morning session of the IBTA Summit was packed with patient advocates, healthcare professionals, representatives of industry and others, listening to the clinical lectures about brain tumours.
Joining the IBTA Summit in Vienna was Dr Manmeet Alhuwalia who provided a summary and feedback from previous day’s special think tank meeting on brain metastases for which the IBTA collaborated with the American Brain Tumor Association.
Dr Manmeet Ahluwalia is an expert on brain metastases and is based at the Miami Cancer Institute in the United States.
Dr Manmeet Ahluwalia presented a summary on the International Patient Advocacy Symposium on Brain Metastases that took place on 25 June 2023 in Vienna (the day before the Summit), with a focus on the clinical perspective of managing brain metastases. He provided insights into the current landscape and advancements in the understanding and treatment of brain metastases.
Brain metastases, which are cancers originating in other parts of the body and spreading to the brain, were the central theme of the Symposium. Dr Ahluwalia emphasised that brain metastases are ten times more common than primary malignant brain tumours. The most common cancers that tend to metastasise to the brain include lung cancer, breast cancer, and melanoma.
Approximately 200,000 patients are diagnosed with brain metastases each year in the United States. Historically, the prognosis for these patients was poor, with an average survival of only nine to twelve months. However, recent developments in medical interventions have transformed this landscape, offering new hope for extended survival and improved quality of life.
A key reason for the increasing incidence of brain metastases is the overall improvement in cancer care of a person’s primary tumour, leading to longer survival of patients with systemic cancers. As patients live longer, their likelihood of developing brain metastases increases. Additionally, advancements in diagnostic techniques, such as the requirement for brain MRIs in stage 4 cancer trials, have contributed to better detection rates.
Manmeet Ahluwalia emphasised the importance of advocacy in ensuring availability of appropriate screening measures, particularly in European countries where brain MRIs are not yet a standard part of staging workups. It was highlighted that different types of cancers have varying tendencies to develop brain metastases.
Traditionally, brain metastases were primarily managed through neurosurgery, radiosurgery, and whole-brain radiation. However, advancements in drug development have expanded treatment options, with targeted therapies and immunotherapies demonstrating promising outcomes.
The Symposium showcased that treatment strategies often depend on the medical professionals involved, whether medical oncologists or neurooncologists and indicated a shift from a sole reliance on surgical and radiation interventions. First-generation targeted therapies were less effective, with response rates of around 20-30%. However, newer generation drugs have shown much higher response rates, reaching 50-70%, particularly in ALK-driven tumours.
The Symposium underscored the significance of combination therapies, highlighting that the treatment of brain metastases is a collaborative effort involving multiple specialists, including neurosurgeons, radiation oncologists, neuropathologists, and neurooncologists. Dr Ahluwalia presented data indicating that combining radiosurgery with targeted therapies and immunotherapies can lead to more complete responses, with immediate or concurrent immunotherapy showing better outcomes.
He explained that the Symposium also delved into future directions and challenges in the field of brain metastases. Genomic profiling and signatures are being developed to predict the likelihood of brain metastases. Additionally, emerging technologies, such as non-invasive methods to disrupt the blood-brain barrier, hold promise in drug delivery and enhanced treatment efficacy.
It was emphasised that clinical trials are essential for guiding
the management of complex brain metastases. The need for multidisciplinary care, neurocognitive testing, and the importance of treating brain metastases in tertiary care centres was highlighted.
The Symposium concluded by highlighting the importance of global initiatives and collaboration. The establishment of the Miami Cancer Institute as the coordinating site for the International Radiosurgery Research Foundation was a notable example. The collaboration among leading cancer centres aims to advance research and treatment strategies for brain metastases.
In conclusion, Dr Alhuwalia provided a comprehensive overview of the current state of understanding, diagnosis, and treatment of brain metastases from a clinical perspective. The symposium highlighted the rapid transformation of the landscape due to advancements in targeted therapies, immunotherapies, and multidisciplinary approaches. The collaborative efforts of patient advocacy groups and global initiatives were showcased as critical in advancing the field and improving patient outcomes.
Report on metastatic brain tumours: patient advocate perspective
Feedback from the International Patient Advocacy Symposium on Brain Metastases - June 25, 2023 (run by the International Brain Tumour Alliance/IBTA in collaboration with the American Brain Tumor Association/ABTA)
Speaker: Ralph DeVitto and Nicole Willmarth, American Brain Tumor Association (ABTA), Chicago, United States
Key points
■ Brain metastases in the United States is estimated between 50,000 to 500,000 cases yearly.
■ Primary cancer representatives discussed origins and collaborative solutions.
■ Four priority areas were identified: research, patients and caregivers, treatment access, diagnosis.
■ There were proposed initiatives in each area to address challenges and gaps.
■ Collaboration was stressed as key to impactful solutions.
■ Research challenges include prevention, biomarkers, clinical trial inclusion and global surveys.
■ The patients’ and caregivers’ focus includes education, support, multidisciplinary care and symptom management.
■ Access to treatment focusses on overcoming barriers (including participation in clinical trials), biomarker testing, cost and education.
■ Diagnosis challenges include early detection, studies, efficient screening, better communication.
■ Next steps for patient advocacy groups regarding the challenges of brain metastases include regular international meetings, working groups, mapping resources and fundraising.
The Symposium, convened jointly by the International Brain Tumour Alliance (IBTA) and the American Brain Tumor Association (ABTA), focused on collaborative efforts to improve research, patient care, access to treatment, and diagnosis for people with brain metastases. Ralph DeVitto, CEO of ABTA, highlighted the ongoing efforts of that organisation, initiated in 2018, to address brain metastases in the United States through a collaborative approach. Under the leadership of Nicole Willmarth, Chief Mission Officer of ABTA, the initiative gained momentum and attracted scientific advisors and partners. Recognising the lack of accurate data on the incidence of brain metastases in the United States, the ABTA works towards data collection and collaboration.
Nicole Willmarth (left) and Ralph Devitto (right) of the American Brain Tumor Association (ABTA) provided feedback to Summit participants on the previous day’s First International Patient Advocacy Symposium on Brain Metastases organised by the IBTA in collaboration with the ABTA.
Ralph DeVitto - President and Chief Executive Officer, American Brain Tumor Association (ABTA) highlighted some of the brain metastases Symposium’s key takeways.
Key Symposium Takeaways
Ralph DeVitto, revealed that the estimated incidence of brain metastases in the United States ranges between 50,000 and 500,000 cases annually. The exact incidence is unknown. Thus, unmet needs begin with basic data collection.
The Symposium drew participation from representatives of primary cancer disciplines, such as lung, breast, kidney, and melanoma, which commonly metastasise to the brain.
The interactive and collaborative nature of the event facilitated the emergence of targeted projects intended to enhance the well-being of patients and caregivers affected by brain metastases. Furthermore, a commitment to establishing regular meetings among various brain tumour and other primary cancer organisations reflects the ongoing dedication to collaborative efforts and shared goals.
The Symposium emerged as a dynamic platform fostering extensive discussions and partnerships. Within this environment, the identification of four pivotal priority domains – research; patients and caregivers; access to treatment, and diagnosis and treatment –underscored the focus on comprehensive problem-solving.
In a bid to bridge existing gaps and challenges, distinct initiatives were proposed within each priority area (see below). Notably, the Symposium emphasised collaboration as a potent strategy for consolidating resources and orchestrating more impactful solutions to tackle the multifaceted challenges at hand.
Priority areas and discussion points
1. Research:
■ Investigating brain metastases prevention and early diagnosis through research.
■ Developing biomarkers to identify patients at higher risk of brain metastases.
■ Collecting accurate incidence and mortality data to better understand the scope of the problem.
■ Inclusion of brain metastases patients in clinical trials, especially those with progressive disease.
■ Updating and expanding the ABTA patient, caregiver, and physician survey initiated in 2018.
2. Patients and caregivers:
■ Mapping existing patient education materials and addressing gaps.
■ Raising public awareness about brain metastases and its symptoms.
■ Providing individualised support through connections with patients who have similar experiences.
■ Developing checklists for multidisciplinary care teams to im prove patient management.
■ Offering practical resources for symptom management, including transportation assistance.
3. Access to treatment:
■ Addressing barriers to inclusion of brain metastases patients in clinical trials
■ Mapping barriers to access and developing strategies to overcome them
■ Expanding access to biomarker testing for targeted therapies
■ Identifying and addressing cost, education, and awareness-related barriers
4. Diagnosis and treatment:
■ Advancing early diagnosis through targeted screening and higher-risk patient identification
■ Conducting prospective studies for brain metastases patients
■ Educating healthcare professionals about the importance of contrast MRI for accurate detection
■ Exploring more cost-effective and efficient MRI screening methods
■ Enhancing communication between healthcare professionals and patients regarding treatment options
Next steps:
■ Regular virtual meetings will be convened to maintain momentum and collaboration.
■ Bi-annual in-person meetings are proposed to accommodate the busy schedules of participants.
■ Working groups will be formed to address immediate priorities and actionable items.
■ Existing resources will be mapped to identify gaps and overlaps.
■ ABTA has committed to raising funds for research and data collection.
Conclusion:
The International Patient Advocacy Symposium on Brain Metastases marked a significant step in the collaborative efforts to improve the lives of individuals affected by brain metastases. With key priorities identified and specific projects outlined, the Symposium provided a blueprint for further action and collaboration among primary cancer and brain tumour organisations.
The commitment to regular meetings, ongoing collaboration, and targeted initiatives demonstrates the dedication of the Symposium participants to making tangible advancements in research, care, and treatment options for brain metastases patients and their caregivers.
Amber Barbach, whose organization specializes in supporting glioblastoma research in the United States, asks a question.
“Ask the Expert” panel session: a summary
Introduction
The “Ask the Expert” panel session at the IBTA Summit provided an insightful platform for discussing various aspects of brain tumour management, diagnostics, and therapies. Experts from diverse fields, including neurosurgery, oncology, radiation oncology and pathology, convened to answer pertinent questions and share their knowledge on current trends, challenges, and innovations in the field.
Here are some summarised excerpts from the panel discussions with the audience.
On brain metastases
Brain metastases, also known as metastatic brain tumours, are secondary malignancies that spread to the brain from other parts of the body. In contrast, glioblastoma (GBM) is classified as a primary brain tumour, originating within the brain itself. GBM rarely metastasises outside the brain.
Typically, brain metastases originate from cancers such as lung, breast, melanoma, kidney, and others capable of spreading to various body parts. This contrasts with primary brain tumours that arise and remain in the brain due to their locally infiltrative nature.
The concept of “secondary glioblastoma” previously referred to the progression of a tumour from a lower grade, such as grade 2 astrocytoma, to a higher grade, culminating in grade 4 astrocytoma, or GBM. This delineation between primary and secondary GBM has become obsolete due to the understanding of the IDH mutation, which characterises lower grade tumours, while IDH wildtype is indicative of glioblastoma. The use of “secondary GBM” terminology has been phased out in favour of more current genetic-based classifications.
On CAR-T treatments
CAR-T cell therapy, a form of immunotherapy targeting specific genetic markers, has shown promise in treating various diseases. It is already approved for several haematological malignancies. However, its
application in treating gliomas, particularly brain tumours, is still in the early stages and presents numerous challenges.
Initial trials indicate that CAR-T cells can reach and impact tumours locally, yet this has not translated into significant clinical benefits. Progress appears more promising in rare tumours like CNS lymphoma, where CAR-T therapies, originally developed for lymphoma, are being tested. This approach is logical, given the therapy’s background, but full approval for such treatments in CNS lymphoma is still pending.
In paediatric oncology, CAR-T cell therapy shows potential, especially for diffuse midline gliomas (DMG), previously known as diffuse intrinsic pontine glioma (DIPG). Despite these hopeful signs, it remains a nascent area of research, underscoring the need for further investigation and development to fully harness CAR-T cell therapy’s potential in these challenging cases.
On neuro-oncology as a specialty
Neuro-oncology as a specialty varies significantly across countries and hospitals, with some countries recognising it as a distinct field, while others do not. For instance, in Austria, there is no separate specialty for neuro-oncology, and care for patients with brain tumours can differ widely from one city or hospital to another. Treatment might be administered by medical oncologists within internal medicine or by neurologists without neuro-oncology board certification, depending on the institution.
In some countries, clinical oncologists are responsible for both chemotherapy and radiotherapy, highlighting the diverse approaches to treatment. Despite the lack of a formal specialty board approval for neuro-oncology in many regions, efforts are ongoing at a European level to gain recognition, although it is expected to be a lengthy process.
The quality of care for brain tumour patients does not necessarily suffer due to the absence of a neuro-oncology specialty. The level of care often depends on the setting, with a potential disparity in expertise between community settings and larger, specialised centres like university hospitals or large cancer centres. Specialists who deal with brain tumours daily, including neurosurgeons focused exclusively on brain tumours, are likely to be more up to date with research and treatment methods compared to those who encounter these cases less frequently.
Left to right: Susan Chang (University of California San Francisco), Nicole Willmarth and Ralph DeVitto (both of the American Brain Tumor Association/ABTA).
Identifying and supporting neurologists or oncologists with a keen interest in brain tumour care is crucial. Encouraging these physicians to undergo mentoring and gain hands-on experience from experts in the field can enhance their proficiency, even without specific board certification.
The importance of multidisciplinary teams (MDTs) in the treatment of brain tumour patients cannot be overstated. To address the educational gap, initiatives in Europe and the United States, such as the European Association of Neuro-Oncology’s (EANO) “The School of Neuro-oncology” and the Society for Neuro-Oncology’s (SNO) similar programme, offer training and webinars for healthcare professionals interested in specialising in neuro-oncology. These educational opportunities are vital for fostering expertise in the care and treatment of patients with brain tumours.
On the importance of healthcare professional –patient communication
Communicating with patients, especially during their initial visit, presents significant challenges for healthcare professionals. The initial consultation is crucial for establishing rapport, assessing the patient’s
understanding of their diagnosis, and discussing treatment options, including potential long-term side effects. For example, patients need to be informed about immediate side effects of treatments like radiation, such as temporary hair loss, as well as possible long-term impacts, which could affect their quality of life in the years to come. This is particularly complex when explaining these issues to children, who may not grasp the concept of late effects.
It’s essential for patients to feel encouraged to ask questions and seek support for side effects, even a long time after treatment is finished, as many of these effects can be managed with appropriate care. The process of creating a treatment plan, while complex, is a critical aspect of patient care, with the quality of the doctor-patient relationship being paramount.
From a surgical standpoint, managing patient expectations is also challenging. Patients often seek a prognosis early on, but healthcare providers must emphasise the importance of a step-by-step approach, beginning with detailed investigations like imaging and functional MRI, before proceeding to surgery and treatment decisions.
Pathologists play a unique role in patient communication, especially in the United States where pathology reports are accessible to patients via electronic medical records. This transparency offers an opportunity to improve how complex information, including molecular markers, is communicated to patients. Simplifying these reports could help patients better understand their condition and treatment options.
Challenges in doctor-patient communication are not only due to the complexity of the information but also to infrastructural and time constraints. The healthcare system often faces pressures from a high patient-to-physician ratio and the administrative burdens of clinical trials, underscoring the need for improvements that would allow more time for patient care.
Diverse opinions from different doctors highlight the importance of seeking care from specialised centres experienced in treating brain tumours. These centres have access to advanced imaging and surgical techniques, providing patients with the best possible care. Operating on gliomas regularly, for example, greatly enhances a surgeon’s expertise.
Overall, despite the challenges, interacting with patients is deeply rewarding. Improving communication, streamlining administrative processes, and ensuring patients have access to specialised care are key to enhancing patient experiences and outcomes.
Members of Ask the Expert Panel are (left to right): neuro-pathologist Dr Adelheid Woehrer, radiation oncologist Dr Carola Lutgendorf-Caucig, neurosurgeon Professor Dr Georg Widhalm and oncologist Professor Dr Matthias Preusser.
Anita Granero founder and president of Oscar’s Angels Italia and Oscar’s Angels France poses a question.
Members of the Ask the Expert Panel session at the IBTA World Summit included (left to right): Nicole Willmarth (Chief Mission Officer, American Brain Tumor Association), neurologist Dr Tracy Batchelor (Harvard Medical School) and Dr Manmeet Ahluwalia (medical oncologist at Baptist Health).
We hope you’ve enjoyed reading these excerpted pages from the report of the 2023 IBTA World Summit of Brain Tumour Patient Advocates.
To read the rest of the Summit report, please visit https://theibta.org/ibta-news/report-on-5th-world-summit-of-brain-tumour-patient-advocates-published/
Actor and comedian Miles Jupp is centre stage for his one man show “On I Bang”
Following a seizure in August 2021, the popular UK actor, comedian, writer and father-of-five Miles Jupp was diagnosed with a low-grade meningioma After a period of rest and recovery post-neurosurgery, and in January 2022, Miles returned to the stage and gave a performance at the Hammersmith Apollo Theatre in London in front of 3,000 people Miles is now back full-time to the job he loves – entertaining audiences with his sharp, sparkling wit His oneman show, “On I Bang” is based on his own experience about surviving a brain tumour – a revealing tale described as being about “surprise, fear, luck, love and qualified medical practitioners”
Miles is known for his many appearances on radio, television and in film He’s played diverse roles ranging from Archie in the children’s UK TV series “Balamory” to being cast as Emperor Francis the First in Ridley Scott’s epic movie “Napoleon” – not forgetting, too, his appearance as a TV weatherman in “Harry Potter and the Order of the Phoenix” and as a regular panellist on the awardwinning UK TV comedy game show “Would I Lie to You?”
In 2025, Miles will be going back on the road and traversing the UK with
his brilliant, one-man show – elegant, dramatic, moving, joyous, perceptive and inspirational all at the same time The IBTA is honoured and delighted that Miles has featured in our podcast series, “A Brain Tumour and Me” and we wish him every success for his 2025 tour n
To listen to Miles Jupp’s story, on the IBTA’s “A Brain Tumour and Me” podcast series, please visit www.theibta.org
For information about Miles’ 2025 “On I Bang” UK tour, please visit https://www.milesjupp.co.uk/on-tour/
The multi-talented Miles Jupp
Miles Jupp (right) pictured here with the IBTA’s podcast producer Graham Seaman (left) of Graham Seaman Media during Miles’ podcast interview for the IBTA
IBTA co-directors Kathy (right) and Gordon Oliver (left) caught up with Miles Jupp (centre) at his impressive oneman show in Epsom, Surrey, UK in 2024
Corri al Massimo per IRENE 2024
Patrizio Fausti, President
Associazione IRENE odv
Patrizio Fausti of the Associazione IRENE odv in Italy wrote to let the IBTA know that on 26th October 2024, to coincide with International Brain Tumour Awareness Week, IRENE held its annual ‘Corri al Massimo per IRENE’ footrace and walk in Rome, dedicated to the memory of Massimo Crocco, a Italian sportsman who died from a brain tumour
With the support of the ASD Podistica Ostia, the IRENE event took place at the Villa Pamphili The Villa Pamphili is a seventeenth century villa with the largest landscaped public park in Rome The event included a competitive element (over a distance of 5 kms) with various Roman sports clubs and athletes as well as a non-competitive element for patient, family members and friends 146 participants covered a distance of 730 kms during the ‘Corri al Massimo per IRENE’ n
Raise awareness of the challenges of brain tumours - plan an event for International Brain Tumour Awareness Week 2025 (25th October to 1st November) Please join us in 2025!
Some of the team members for ‘Corri al Massimo per IRENE”
Participants ready to begin the ‘Corri al Massimo per IRENE” at Villa Pamphili, Rome, Italy
Patient advocacy track added to ASNO for the first time
…how a collaboration forged at the IBTA Fourth Biennial World Summit of Brain Tumour Patient Advocates at the National Institutes of Health in the US in 2019 was central to its success
Sarah Rigby, PVW Brain Tumor Foundation, Hong Kong and Melissa Lim, Brain
Tumour Society (Singapore)
The 19th annual meeting of the Asian Society for Neuro-Oncology (ASNO) was held in Singapore from 16th to 18th August 2024 Jointly organised by the Singapore Society for Neuro-Oncology (SSNO) and ASNO, the powerful theme Coming Together For Our Patients heralded the first time that a patient advocacy track was included at an ASNO conference
Melissa Lim, President of Brain Tumour Society (Singapore), led the patient advocacy track and kicked off the programme on ASNO Day 2 with a presentation titled ‘A New Kid on the Block: Introduction to Asia Pacific Brain Tumour Alliance (APBTA)’ Melissa shared the inspiring story of how the APBTA was formed when a group of patient advocates from the Asia Pacific area first got together at the International Brain Tumour Alliance’s (IBTA) Fourth Biennial World Summit at the National Institutes of Health in Bethesda, Maryland, United States The group realised the potential for regional collaboration and sharing knowledge With the guidance of IBTA’s Chair and Co-Director, Kathy Oliver, this group has since gone from strength to strength ASNO conference participants enjoyed a series of video clips that showcased the wide-ranging work carried out by affiliated patient groups in Australia, China, India, Japan, New Zealand and Pakistan
On ASNO Day 3, the patient advocacy track comprised three sessions that
included presentations and panel discussions
Session 1 – Together, we can do magic
The day started with a welcome from Melissa Lim, who chaired the patient advocacy track, followed by a panel discussion by Dr Low Chyi Yeu David, Colin Chee (patient representative) and Dr Yeo Tseng Tsai Discussing the collaboration between healthcare providers and patient groups, topics included the motivations of patients and medical advisors for setting up support groups, the respective roles of patient leaders and medical advisors, as well as guidelines for engagement between the various stakeholders
The session also included a dialin presentation by Chris Tse, Chair of Brain Tumour Support NZ (BTSNZ), who described an impressive case study of how a coordinated clinician-patient
response helped resolve a potential drug shortage in New Zealand
Focusing on how healthcare professionals could support patient organisations in both developing and developed countries, Komal Syed (Founder of the Brain Tumour Foundation of Pakistan) and neurosurgeon Dr Nitin Garg (BTSG Awareness Foundation and Bansal Hospital, Bhopal, India) dialled in and joined Laureline Gatellier, President of the Japan Brain Tumour Alliance (JBTA) In contrast to
Members of Brain Tumour Society (Singapore) and the Asia Pacific Brain Tumour Alliance at the start of the patient advocacy track on Day 3 of ASNO
Chris Tse, shown onscreen (Brain Tumour Support NZ), describes a case study of how a coordinated clinician-patient response achieved ‘magic’
more mature patient organisations such as Japan Brain Tumour Alliance, there are strong cultural mindsets in both Pakistan and India that often stand in the way of meaningful patient-healthcare provider collaborations, highlighting the difficulties that patient advocacy faces in some parts of the region
Session 2 – Beyond the clinics and hospitals: a case for brain tumour specialist nurses
The second patient advocacy track session at ASNO opened with an online presentation from Dr Jackie Yim, Head of Operations and Research at the nonprofit organisation the Brain Cancer Group sharing why they decided to sponsor a brain tumour specialist nurse programme in Australia This was followed by a
presentation by caregiver Joanne Hüging who shared her experience of this programme
A joint presentation by brain tumour caregiver Karishma Tambawala from Singapore and National University Hospital Care Coordinator Sister Laura Tan illustrated how care was extended beyond the hospital to the homes of some paediatric oncology patients in Singapore Subsequent perspectives from Marina Kastalan, a neuro-oncology nurse practitioner from Australia, reinforced how brain tumour nurse specialists make a huge difference to patients and caregivers The following panel discussion, which included Dr Miriam Kimpo of the National University Children’s Medical Institute and Staphnie Tang, Executive Director of not-
for-profit ‘LOVE,NILS’, explored how Sister Laura’s position at National University Hospital was made possible through the sponsorship from the charity LOVE,NILS, and briefly covered the accountabilities and challenges of such an arrangement
Session 3 – The power of hope: inspiration from long-term glioblastoma patients
In the final session of the patient advocacy track at ASNO, Lynda Tse (wife of Brain Tumour Support NZ Chair Chris Tse), an 18-year glioblastoma survivor and Sarah Rigby, a 12-year glioblastoma survivor from Hong Kong, shared their uplifting stories, reminding everyone of the importance of keeping hope alive
It was also moving to hear Chris and Lynda describe how they partnered as a couple to take their family through their toughest times in their brain tumour journey Dr Guo Cheng Cheng from China subsequently contributed ideas about how clinicians can empower hope in their patients
Positive outcomes from the patient advocacy track at ASNO “I really enjoyed the sessions,” said one patient advocacy track participant “Professional insights were informative, and the patients' testimonies were very touching "
Several ASNO delegates approached patient advocacy track session speakers to reach out for advice about how best to build patient support groups in their local neuro-oncology communities, with many contact details changing hands, planting the seeds for future collaborations
The success of the patient advocacy track attested to the relevance of ASNO 2024’s theme and demonstrated, beyond doubt, the potential influence of patient groups In the words of Melissa Lim, who conceptualised and then led the patient advocacy track, “We may be patients, but we have talents and resources to contribute alongside the medical and scientific community to work synergistically for the betterment of patients and caregivers ”
Let’s hope that ASNO Shanghai in 2025 will see a repeat of this success n
Komal Syed, onscreen left (Brain Tumour Foundation of Pakistan), Dr Nitin Garg, onscreen right (BTSG Awareness Foundation, India), Melissa Lim, onstage left (Brain Tumour Society (Singapore)) and Laureline Gatellier, onstage right (Japan Brain Tumor Alliance) share their experience of working in developing and developed countries
Brain tumour patient Sarah Rigby, left (PVW Brain Tumor Foundation, Hong Kong) and clinician Dr Guo Cheng Cheng, right (China) share ideas about the power of hope in a panel discussion with Melissa Lim, centre
Marina Kastalan, third from left (Australia) shares her experience of being a neuro-oncology nurse practitioner in a panel discussion during the patient advocacy track at ASNO
Photo credit: Brain Tumour Society (Singapore)
The Anni Hofmann Stiftung is a private initiative to support basic research to understand the biological foundation of glioblastoma. Funds are fully invested into basic research projects. The focus is the tumor interaction with the host. The projects supported so far are centered around angiogenesis, immune defense and intercellular communication. It was a decision on principle to support to research instead of advocacy to get urgently needed results to battle this aggressive disease. We work with long-term surviving patients to inspire hope and emphasize, that research efforts will eventually lead to insights, which will extend all patients´ lifespans.
Increase awareness of the early warning signs of brain tumors and raise critical funds for targeted research that leads to earlier detection and better treatment options to improve the lives of those diagnosed with a brain tumor/cancer in the United States.
Proudly sponsoring the research of Dr. Karen Fink, Baylor Scott & White in Dallas and Dr. Sam McBrayer, Children’s Hospital in Dallas, focusing on adult and pediatric brain tumors.
For more information, visit: www.TheNickGonzalesFoundation.org nickgonzalesfoundation@gmail.com
IRENE odv is an italian community of brain tumor patients and their caregivers. For 20 years, our mission has been to ensure access to care, quality of life, and protection of patients' rights. We are working for: disseminate information about brain tumors and patients' rights; promote support groups for patients and education for caregivers; offer home rehabilitation services to patients; offer personal care and transportation services for patients.
Brain Tumour Alliance Australia (BTAA) www btaa org au
Brain Tumour Association Western Australia braintumourwa@hotmail com http://www btawa com au/
Brain Tumour Support GroupCancer Council Queensland https://cancerqld org au/get-support/ or https://cancerqld org au/get-support/cancer emotional-support/brain-tumour-support/
Cure Brain Cancer Foundation http://www curebraincancer org au Grey Matters www greymatters org au
Mark Hughes Foundation https://markhughesfoundation com au/
Neuro-Oncology Information Network - NOgIN http://www sydneybrainandspinesurgeons com au/ nogin html
Newro Foundation
http://www newrofoundation com au/
Peace of Mind Foundation http://www peaceofmindfoundation org au
Robert Connor Dawes Fund http://rcdfoundation org/
United Brain Tumour Support
Contact Pete McLaughlin: (Australia) 0422 784885
Listing here also: http://www yourcare com au/ supplier/profile/united-brain-tumour-support
BELGIUM
Werkgroep Hersentumoren http://www wg-hersentumoren be
CAMEROON
Jacob’s Hope Foundation https://www facebook com/Jacobs-HopeFoundation-for-Brain-tumours-and-othercancers1735452683351613/
CANADA
BC Cancer Agency http://www bccancer bc ca/
B-Strong
http://www bstrong ca
b.r.a.i.n.child
http://www sickkids ca/Brainchild/index html
Brain Tumour Foundation of Canada www braintumour ca
Gerry and Nancy Pencer Brain Tumor Centre http://www pencerbraintrust com/
Meagan Bebenek Foundation
https://www meaganbebenekfoundation org/
Tali's Fund
www taldoron com
CAYMAN ISLANDS
Brain Tumour Foundation (Cayman Islands)
“The Forgotten” https://www facebook com/pg/bftcaymanislands/ posts/
CROATIA
Croatian Brain Tumor Association - GLIA www glia hr
CYPRUS
Cyprus Brain Tumour Association (CBTA) https://www facebook com/cbta cyprus
DENMARK
HjernetumorForeningen
http://www cancer dk/hjernetumorforeningen/
FRANCE
Alinoe
(Association Lilloise de Neuro-Oncologie) www alinoe asso fr
ARTC Paris
http://www artc asso fr/
ARTC Sud
www artcsud fr
ARTC Toulouse – Midi Pyrenees
http://www artc asso fr Association Léa Princesse
Association Plus Cérébrale que Nous Tumeur https://pluscerebralequenoustumeur fr/
Association Lea Princesse Eternelle http://leapourlavie free fr/
