ERN eUROGEN expands members Renewed funding and other exciting updates planned for 2022 Ms. Jen Tidman ERN eUROGEN Business Support Manager Nijmegen (NL)
Funding The previous EC grants for the ERNs’ coordination and operational activities ended on 28 February 2022. These grants were subject to the EC financial rules for grants where coordinating institutions needed to co-fund grants by 40%, with the EC funding 60% of the total eligible costs.
jen.tidman@ radboudumc.nl
As part of the EU4Health programme (2021-2027), the EC announced an increase in the funding to the ERNs to €26 million (which may increase by a maximum of 20%) to be divided between the 24 ERNs. After intense and ultimately successful lobbying by the ERN Coordinators Group, the EC changed the financial rules for the ERNs (and only the ERNs) to 100% funding by the EC, making grant reporting more efficient.
The European Commission (EC) established the European Reference Networks (ERNs) focusing on 24 specific medical domains in 2017, connecting EU healthcare providers (HCPs) and their experts (in collaboration with patient advocates) to improve the healthcare management of patients suffering from rare New direct grants, beginning on 1 March 2022, will or low-prevalence complex diseases and conditions. ensure the ERNs’ continuity until 2023, when multiannual grants (including grants for the IT and The ERNs facilitate knowledge sharing and transfer, data-related activities currently supported by the quality of care and care coordination, training and Connecting Europe Facility) will also simplify funding education, and stimulation of research, thereby and reduce grant management requirements. establishing new ways to reduce adverse outcomes for patients and subsequently diminishing the cumulative ERN eUROGEN is finalising the agreements for an cost for society. approved €200,000 9-month bridging grant to bring it into the same timelines as the other 23 ERNs and has The ERNs also provide highly specialised advice using submitted an 18-month proposal for €1.1 million, a secure web-based tool known as the Clinical Patient which will be evaluated between March and June 2022, Management System (CPMS). Expert MDTs can with results announced by the EC in July. Therefore, we diagnose, suggest treatment or surgery, and provide hope to have some good news to toast at the Annual post-operative and transitional support across national EAU Congress where we will have a Special Session borders within and between ERNs. and exhibition stand! ERN eUROGEN is the European Reference Network for Rare Urogenital Diseases and Complex Conditions and was established in collaboration with the EAU, which remains a network Supporting Partner. The EC considers diseases rare when they affect <1:2000 (<0,05%), but in some highly complex urogenital conditions, the rate is significantly lower, e.g., urethral diverticula in 1: 250,000 (0,0004%). New members On 1 January 2022, after the 2019 call to join the existing ERNs, 29 new members joined ERN eUROGEN, nearly doubling the network’s size! It now includes 57 HCPs from 20 EU member states, their urogenital specialists, urology and surgical departments, and MDTs (all listed on the ERN eUROGEN website). We created a welcome package for the new members comprising a welcome videoconference, network overview, and updated governance statutes (which will also be agreed upon by all existing members). We will prioritise onboarding and integrating the new members, training them to use CPMS, and ensuring they can actively participate in all current and future ERN-related activities.
2022 activities & objectives ERN eUROGEN will use the funding for its activities and objectives relating to coordination, dissemination, collaboration, development of clinical practice guidelines and clinical decision support tools, evaluation, CPMS, the ERN eUROGEN patient registry, and training and education. Internal criteria The network sets the internal criteria that a HCP must meet to join and remain a network member. In 2022, at the request of our European Patient Advocacy Group (ePAG) and with their full involvement, we will review and update these criteria. We will also be applying to cover three new expertise areas (urological aspects of paediatric renal transplants, male infertility, and paediatric oncological urology). In terms of dissemination, we regularly update our website, issue a regular e-newsletter, and have a presence on social media so please subscribe and follow us for the latest updates. We encourage our members to present network-related results and information at scientific meetings and submit work relating to the network to peer-reviewed journals
Workstream Meeting with new members, February 2022
(e.g., the papers we have published on our clinical results in European Urology and EJSO). Supporting Partners Besides the EAU, we also have as Supporting Partners ESPU, ESSIC, EUPSA, and ARM-Net, and we collaborate with all to maximise work and avoid duplication. We are currently working with the EAU Guidelines Office paediatric panel over our guidelines, the EAU Research Foundation over our registry, and hope to collaborate with the new EAU Patient Office.
This presentation is owned by the ERN and may contain information that is confidential, proprietary or otherwise legally protected.
ERN eUROGEN Welcome Videoconference For New Members Joining 2022 Presented by the ERN eUROGEN Coordination Team & ePAG Representative
21 February 2022
Your ERN logo here
Co-funded by the EU
ERN eUROGEN participates in all the EC's cross-ERN working groups, collaborates with other ERNs relating to multi-systemic rare diseases and complex conditions that require input from more than one ERN, and has begun a global collaboration programme so far including Australia, New Zealand, and developing countries. ERN evaluation process ERN eUROGEN has a lead role in the ERN evaluation process with involvement in the EC monitoring working group, producing a dashboard for monthly data reporting, and extensive input to the EC’s Assessment, Monitoring, Evaluation and Quality Improvement System for the ERNs (AMEQUIS). The first complete evaluation of the ERNs and their HCPs will occur later this year (results in 2023) then every five years. CPMS panel discussions We hold regular CPMS panel discussions, have published a paper on our use of CPMS (available on our website), have piloted cross-ERN CPMS panel discussions requiring expertise from more than one ERN, and provided extensive input relating to the development of a new, easier to use CPMS. ERN eUROGEN registry The ERN eUROGEN registry went live in January 2022. We are collecting standardised, long-term data from our HCPs on patients living with rare urogenital diseases or complex conditions, tracking long-term outcomes into adulthood, and evaluating the efficacy of treatments, resulting in improvements in care and facilitating much-needed research. The latest EC funding call allowed pilot schemes to reimburse HCPs for their experts giving CPMS March/May 2022
advice and registry data entry. If our proposal is accepted, ERN eUROGEN will be launching pilots for both schemes and evaluating them to see if additional investment leads to increased use of these EC-provided tools.
“The ERNs also provide highly specialised advice using a secure web-based tool known as the Clinical Patient Management System (CPMS).” ERN eUROGEN Exchange Programme ERN eUROGEN also trains and educates urologists, surgeons, and related healthcare professionals. The ERN Exchange Programme is due to restart (after COVID-19 related suspension), and we are arranging visits for individuals to HCPs to spread knowledge and stimulate collaboration. The EC is developing an ERN Academy to which ERN eUROGEN will contribute recordings of highly specialised surgeries. Our already successful educational webinar programme will continue with now weekly webinars. We will also produce an Elsevier-published book on rare and complex urology with chapters from our experts and ePAG advocates. The future We will keep the EAU and its members posted on developments, but we hope you agree that the future looks bright for ERN eUROGEN. If you have any questions, are interested in referring a case to us, or would like to get involved, please look at our website to learn more: www.eurogen-ern.eu or email eurogen@uroweb.org European Urology Today
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