On 21 and 22 November 2018, the 4th Conference on European Reference Networks (ERNs) took place at Brussels bringing together health professionals, researchers, patient organisations and policymakers. The conference set to seek how to consolidate the networks and identify the problems that still need to be addressed. One of the key points raised was the integration of ERNs into national health systems as well as the extension of the geographic coverage of the networks. The potential for ERNs to produce clinical guidelines for rare diseases was also mentioned and participants highlighted the importance of the ERN Clinical Patient Management System but also the need to ensure data protection. Finally, long-term sustainability of the ERNs was debated with concerns raised about funding, awareness among patients and health professionals, support from hospital managers, and the limited human resources available to work on ERN-related initiatives. Participants also agreed on the importance of setting up a continuous monitoring of ERNs, a work in progress. As a matter of fact, the working group assigned with this task published a document on 17 January establishing the four main strands of work for the monitoring and quality improvement of ERNs:
- Development of a continuous monitoring system which can be utilised across all ERNs
- Periodical self-assessment and reporting of the activities of the ERNs and healthcare professionals (HCPs) to the European Commission and the Board of Member States for ERNs
- Stronger involvement of Member States in the assessment of their national HCPs wishing to participate in, or participating already in related ERNs
- Complementary assessments by third parties when considered necessary
The above dimensions were set by several stakeholders, namely the ERN coordinators, the ERN Board of Member States (BoMs), representatives of EURORDIS and of the Joint Action on Rare Diseases and the European Commission (DG SANTE) and are considered as crucial to develop and implement a robust ERN monitoring and assessment system.