The 20th meeting of the ERN 24 Coordinators with the European Commission’s DG SANTE team was held in person at the EC’s offices in Luxembourg on 21 May 2024.
ERN eUROGEN was represented by Prof. Ivo de Blaauw, the new ERN eUROGEN Sub-Coordinator, Prof. Wout Feitz, the leaving ERN eUROGEN Coordinator and Michelle Battye, Programme Manager of our ERN. Ivo was introduced to the group, and Wout said his farewells and received heartfelt thanks for all his work over the years.
As usual, there was a full agenda, and the minutes will be circulated to members once they are available. The main points included:
- An update for the Board of Member States for ERNs (BoMS), focussing on the EU Joint Action on Integrating ERNs into National Health Systems (JARDIN). There was a reminder to ERNs to disseminate surveys from JARDIN to their members and encourage them to complete them.
- An update on CPMS 2.0, which is now live. The ERNs will roll out its use over the coming months. The EC reported on the legal Administrative Arrangement and the procedures being implemented with Ukraine to allow Ukrainian clinicians to start using CPMS 2.0 for virtual case discussions with ERNs.
- An update on the data collection exercise of 2024 (data from 2023). There is still a large variability in the reporting of results, which will be analysed in more detail going forward by the Monitoring Working Group.
- Clinical practice guidelines with a presentation by the Spanish contractor on lessons learnt and future steps for discussion with the ERN Coordinators.
- Termination of non-active healthcare providers from the ERNs.
- Future ERN expansion: surveys have been conducted with the ERN Coordinators and the BoMS to gauge the appetite for a full new call for Full Members or a more restricted call to just the appointment of Affiliated Partners by the BoMS. The aim is to achieve a higher geographical coverage of Member States by the ERN system, as some countries are still not connected.
- A discussion took place on the ERN Working Group on Knowledge Generation and an interesting presentation from the Commission about the possibility of ERNs using the ERASMUS + programme in the future to facilitate educational cross-border exchanges between our healthcare providers.
A joint meeting between the ERN Coordinators and the BoMS occurred on the morning of 22 May 2024. The combining of these two meetings is a new approach aiming to facilitate greater collaboration between the two groups.
A question was raised during this meeting about the official approval by the BoMS of the expansion of the ERN disease area coverage to add new disease areas and expand the coverage of members to other current ERN disease areas. Many of ERN eUROGEN’s members are waiting to start work on four new disease areas (paediatric transplant urology, rare bladder tumour surgery, male infertility and paediatric oncological urology) that we planned to expand into in 2022. It is hoped that official approval of this will come soon so that the 24 ERNs can implement this process.
