The European Commission has established a system to assess the performance of European Reference Networks (ERNs) to ensure that they meet the goals set for improving care for rare diseases. This includes a set of 18 core performance indicators, designed to help evaluate both the network’s effectiveness and the contributions of individual HCPs. In line with this, all HCPs participating in the ERNs provide crucial data at least once a year to assess their progress.
As of October 2023, additional grant-related indicators are being measured alongside the 18 core indicators outlined in the manual. These updates reflect a commitment to continually raising the standards and improving the impact of ERNs in the rare disease community.
The 2025 Monitoring Exercise is part of this ongoing process. It offers an opportunity for all HCPs to report on key metrics that showcase their contributions and progress in the previous year. By engaging in this exercise, HCPs help ensure that ERNs maintain the high standards expected by the European Commission and continue to work towards advancing care and research in rare diseases.
Monitoring process overview
The exercise will be carried out in two main steps:
- Step 1: Report on two core indicators (New patients and Use of ORPHAcodes) through the EC Monitoring platform: Monitoring platform
Deadline: Friday, 28 February 2025.
- Step 2: Submit additional data on dissemination, training, and clinical research via the EURO-NMD Monitoring Survey: link sent by email on 20/01/2025.
Deadline: Monday, 10 March 2025.
Key points to remember
- Each HCP must designate a single individual (the “Reporter”) responsible for submitting the data for their center.
- Please ensure that only one submission per HCP is made (both the monitoring platform and the survey).
All EURO-NMD HCP representatives have received an email on Monday 20th January 2025 with the link to the 2025 EURO-NMD Monitoring Survey, as well as a PDF handbook with all the practical information needed for the Monitoring exercise. Please note that the link is specific for each HCP and should only be shared with the person designated to submit the data on behalf of the HCP (the Reporter).
If you’re a EURO-NMD HCP representative and did not receive the email, please contact the EURO-NMD Coordination team at ern@ern-euro-nmd.eu