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.
At the initiative’s inception, the Board of Member States approved a core set of 16 indicators, which were used from 2017 to 2023. In September 2023, with the launch of multi-year direct grants for ERNs, several Key Performance Indicators (KPIs) were added to assess the fulfilment of grant obligations, bringing the total number of indicators to 24.
The 2026 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
Deadline: Saturday, 28 February 2026
- Step 2: Submit additional data on dissemination, training, and clinical research via the EURO-NMD Monitoring Excel spreadsheet.
Deadline: Thursday, 10 March 2026
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 (for both Step 1 and Step 2)