European Reference Networks: First monitoring report published

The European Commission has published the first Monitoring report of the European Reference Network (ERN), which includes 24 thematic Networks covering the main clusters of rare, complex, and low-prevalence diseases. Over the course of the last 6 years, there has been 160% growth in the reported number of new patients referred to ERN clinical centres, of which there are 1,606 belonging to 375 hospitals. This highlights the added value and positive impact of ERNs on patient care in the 27 EU Member States and Norway.

The ‘2025 Monitoring report’ compiles the data that is reported to the Commission via regular data collection exercises and presents it per ERN, as well as in the form of country profiles including a statistical overview of the country’s participation. The data is based on a set of 24 indicators that cover the seven core areas of the ERNs’ work: coordination, dissemination, evaluation, Healthcare and Clinical Patient Management System (CPMS), registries, training and education, clinical practice guidelines and other clinical decision support tools.

With these monitoring reports, the Commission provides insights concerning the impact of the networks, their activities and impact for patients and families with rare diseases.

The full report is available here.