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Intense and deep discussions at the ERNs Coordinators’ meeting in November

date:  05/12/2019

The Coordinators of the 24 ERNs and the European Commission met for three days in Brussels, from the 13th to the 15th November, to address several aspects related to the consolidation of their networks, the expansion of their geographical coverage and areas of intervention, and deepening of several areas of action.

The core of the discussions concerned the expansion of the Networks. The geographical coverage of the ERNs in Europe was increased from 44% to 74%, due to the recent inclusion of 247 Associated National Centres and 4 National Coordination Hubs (created 311 links to the ERNs). Affiliated Partners represent around 25% of the total of clinical units participating in the ERNs. Their inclusion will enable more citizens in Europe affected by rare diseases and their doctors to reach the expertise of the Networks, if needed. At the same time, a new call for joining existing ERNs as members will close on the 30th November 2019. This call will allow healthcare providers in Europe to access the right level of expertise through inclusion in the current networks, especially in countries where Networks are not yet represented by full members. There is a need for strong coordination and management from the networks themselves, in order to manage the enlargement of the Networks. Additionally, at the national level, an effort must be done to structure the national referral systems and national networks of expertise centres, so as to rationalise and organise the whole system.

Participants discussed several aspects related to the fine-tuning of the ERNs’ areas of competences and actions. First, they addressed the expansion of the diseases coverage within the existing networks: 8 Networks requested that new sets of diseases could be encompassed within the scope of their networks and were indeed added in the recent call for membership. The Coordinators will also further define internal procedures to ensure the appropriate enlargement of disease coverage by the current members of the Networks. Orphanet presented its work and the revision of classification that is currently being undertaken with some ERNs, in order to align the standards used on both sides. Orphanet also collaborates with several ERNs to produce information for doctors and patients which is published on its website. Then, the Chair of the Coordinators, Ms Irene Mathijssen, highlighted the difficulty of clearly identifying the gaps within and overlaps between the ERNs’ activities. It was decided that this would be further brainstormed amongst the Coordinators themselves. Examples of cross-fertilisation among the ERNs were highlighted, where three Networks (ERN BOND, ERN Transplantchild and ERN eUROGEN) gave examples of the combined activities they are implementing with other ERNs, for instance in the field of education and training, joint publications, common CPMS panels, joint working groups etc.

The other Working groups shared their activities and experience, demonstrating an impressive advancement in carrying out the actions. In the field of education and training, the Coordinators and the Commission are working to set up common templates and layouts for all documents produced by the networks, being clinical, informative or reporting documentation, and a joint repository that eventually will be accessible to the public via the Commission webpage. A new scheme for the exchange of professionals will soon be put in place to enable young health doctors to spend short periods of training in another expertise centre within the Networks, or for senior professionals to also teach in a different expertise centre belonging to an ERN. The Commission will also support the ERNs in the field of clinical guidelines, to enable the production of tools to support decisions for the treatment of rare diseases. A new eLearning platform is also under development to collect all the eLearning modules produced by the different ERNs, in a unique virtual space, thereby creating a sort of virtual Academia.

Research was also an important focus of the work conducted by the Coordinators this week. Most ERNs participated to a workshop organised on the 13th November under the ERN Research Working Group, together with selected Research Infrastructures. Results from a survey conducted amongst ERN members by the European Joint programme on rare diseases (EJP RD) showed that awareness of the various existing research infrastructures is still low amongst researchers. Raising awareness about research infrastructures is therefore of critical importance. The services offered by research infrastructure should meet the needs of users, so several ERN 'use cases' were presented which could be further tested with ERN members as users. To facilitate the discussion, users' needs were structured around three thematic areas: support for clinical trials, support to conduct translational research (drug, vaccine or diagnostic development programme) and support to use biobanks, gain access to biological samples. The research infrastructures and projects involved in the workshop (BBMRI, EATRIS, ECRIN, C4C and EJP RD) presented how they could help ERN members with biomarker confirmation, sample access, disease model identification, clinical trails, navigating the regulatory pathway and education and training. Some 'use cases' were then presented by different ERN representatives, for example to investigate a possible clinical trial around the use of one drug in Febrile infection-related epilepsy syndrome (FIRES) for ERN EpiCARE, or a compound for the treatment of cystic kidney disease that showed promise in Zebrafish models for ERKNet. The workshop was successful in its aims of increasing awareness of research infrastructures amongst ERNs and challenging the research infrastructures with ‘use cases’. Furthermore, it was the first step towards increased collaboration