Always carry tissues with you. I learnt

PROJECT LOOKS AT GROWING UP WITH IBD

How IBD can affect young people’s chances of making or maintaining friendships is being investigated in an 18-month research project.

Being Me With IBD: Growing Up And Getting On With My Life is led by Professor Bernie Carter of Edge Hill University.

Funded by Crohn’s and Colitis UK, the study will initially involve recruiting 120 young people aged between 14 and 25 with IBD YOUNG PEOPLE WILL BE SURVEYED ON FRIENDSHIPS, ANXIETY AND MORE

THERE’S BEEN VERY LITTLE WORK ABOUT WHAT IT’S LIKE TO LIVE WITH IBD WHEN YOU ARE YOUNG

to complete a survey on factors such as friendships, loneliness, anxiety, health and their sense of control over their lives.

Potential participants will be approached to complete the survey when they attend appointments in the next few months at Alder Hey (Liverpool), Royal Liverpool University Hospital and St Mark’s in London.

Researchers will then

10,000th VOLUNTEER JOINS STUDY

The 10,000th patient has been recruited to The National Institute of Health Research (NIHR) Inflammatory Bowel Disease BioResource research programme.

Launched nationally in 2016, the IBD BioResource recruits patients with IBD to help researchers better understand Crohn’s Disease and Ulcerative Colitis and try to develop new treatments.

Those who have joined have indicated that they are willing to participate in research studies and trials on the basis of their genetic make-up or clinical features. Dr Miles Parkes, national lead for the NIHR IBD BioResource project and consultant gastroenterologist at Cambridge University Hospitals, said: “Getting

to the 10,000 recruits mark is a fantastic achievement and I am very grateful. Since its launch we have been delighted by the level of enthusiasm shown by

recruitment sites and patients BIORESOURCE PROGRAMME AIMS FOR 25,000 PATIENT RECRUITS Dr Miles Parkes: ‘clinical benefit’

ask up to 40 of those surveyed to take part in interviews about their experience of living with IBD.

Participants will be asked to draw a map of their friendships, and to take photographs about the positive aspects of friendship and the things about IBD that threaten these relationships.

“We know life can be

FOR MORE INFORMATION Visit ibdbioresource. nihr.ac.uk

alike, and particularly by the scale of interest from scientific community.” To be a part of the IBD BioResource, patients are asked to provide a small blood sample and clinical data for researchers to study. They may then be invited to participate in research studies or trials. Crohn’s and Colitis UK is contributing towards funding the BioResource.

What’s it like to be young and have IBD?

tough for adults with IBD but there’s been very little work about what it’s like to grow up and have to navigate and make social connections when you are young,” said Professor Carter.

After the data has been analysed and reported, the aim is to produce engaging resources that will help to support young people with IBD to navigate the challenges they face.

RESEARCH UPDATES A ROUND-UP OF SOME OF THE RECENT SCIENTIFIC WORK THAT HAS BEEN SUPPORTED BY CROHN’S AND COLITIS UK

Scientists at the Royal Devon and Exeter NHS Foundation Trust have identified several genes that could determine whether someone has a bad reaction to a medication. The project, led by Dr Tariq Ahmad, received a grant of £106,298.

The study identified a number of genetic markers that predispose patients with IBD to having serious side effects, such as pancreatitis or bone marrow suppression, when taking common DRUG SIDE EFFECTS

medications such as azathioprine and mercaptopurine.

The scientists hope their study will enable UK clinicians to take a simple blood sample from

Genes can dictate reactions to a medicine

patients prior to starting drug treatment, which could then influence a decision to avoid certain drugs, reduce the target dose or increase the monitoring for side effects.

COULD YOU HELP? Prof Carter and her team at Edge Hill are keen to hear from people aged 14-25 with IBD who would like to join the study’s advisory panel.

The role involves giving feedback on survey findings and resources produced following the research to make sure they will meet the needs of a young audience.

A video explaining the role is available on YouTube – search for The Being Me With IBD Study.

FIGHTING FATIGUE

Fatigue is a common symptom of IBD, with more than 40% of patients reporting it when in remission and 86% when their disease is active.

A pilot study has been investigating whether a multidisciplinary programme of psychological and educational support could help change the fatigue levels among those whose IBD was in remission.

The project was initially supervised by Professor John Hamlin – of the Leeds

Gastroenterology Institute (LGI), St James’s University Hospital – and later by Prof Alexander Ford (also of LGI and University of Leeds).

With a grant of £8,490, the study involved an intervention group who were taught skills for managing fatigue such as relaxation practices, the recognition and management of relapse of fatigue, and goal setting, while a control group received standard medical care.

The researchers found that there was a positive effect on the fatigue and energy levels of the intervention group, and believe that further research in the area would be very welcome. It can help to set goals