The European Commission has set up a Continuous Monititoring System for the European Reference Networks. This exercise is an obligation for the ERN membership (Full Members and Affiliated Partners). Each healthcare provider (HCP) member of ERKNet has the responsibility to provide information on the number of patients with rare diseases that it is treating, as well as other activities undertaken to support the network (e.g. CPMS, publication and education/training activities). Once per year, the ERKNet coordination office is responsible for collacting the data and to submit it to the EC.

The next data collection will be due in February 2024. Therefore, we will contact all member HCPs in January 2024 to start providing the required dating for the year 2023.  

Please find here the set of indicators including definitions and explanations. 

The EU created a new virtual platform. To date, two indicators (new patients and use of orphacodes) must be submitted there. Please check here how to get access to this tool. ­­