Under Costruction
The European Commission monitors the performance of European Reference Networks (ERNs) to ensure they meet their goals in improving care for rare diseases. This assessment is based on 18 core performance indicators designed to evaluate both network effectiveness and individual HCP contributions. All participating HCPs provide essential data at least once a year to track progress.
Monitoring Process Overview
The exercise consists of two main steps:
Step 1: Report on two core indicators (new patients and use of ORPHAcodes) through the EC Monitoring platform: Monitoring platform
Step 2: Submit additional data via the ERN BOND Monitoring Survey (Deadline to be defined)
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