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 collating the data and to submit it to the EC.

The next data collection will be due in March 2023. Therefore, we will contact all member HCPs in January 2022 to start providing the required dating for the year 2022.  

Please find here the entire set of indicators including definitons and explanations. ­­

In summary, the main metrics are: 

2.1: Number of new patients referred to the Health Care Providers

4.1: Number of education/training activities not accruing higher education credits

4.2: Number of formal educational activities accruing higher educational credits

5.1: Number of Clinical Trials/Observational prospective studies/Observational cohort or cases-control studies/case-series studies

5.2: Number of accepted peer-reviewed publications in accredited scientific journals

6.1: Number of Clinical Practice Guidelines and other types of Clinical Decision Making Tools adopted

6.2: Number of new Clinical Practice Guidelines or other types of new Clinical Decision Making Tools (clinical consensus statements or consensus recommendations) written

7.1: Number of congresses/ conferences/ meetings at which the ERN activities and results were presented