ERN members participate in an annual Continuous Monitoring exercise, and in 2023 there was the first 5-year evaluation process. The EU has recently published a report that “...presents the final and overall results of the evaluation exercise, as well as a comprehensive analysis of the strengths, areas for improvement and other barriers in both the ERN system and the evaluation methodology.”
24 European Reference Networks and 836 members completed their first evaluation. The evaluation concluded that the ERN ecosystem is functioning well, delivering on highly specialist work for rare disease patients such as consultations for diagnosis and terhapies, the production of clinical guidelines and specialised trainings, registration of patients.
- 100% of the ERNs obtained satisfactory results
- 88% of their healthcare providers obtained satisfactory results
- 4% of their healthcare providers saw their membership terminated
- 72 clinical centres will be re-evaluated after implementing their improvement plans
You can download and read the entire report. Conclusions of the evaluation include:
- Coordination within the ERN System
- Increase hospital’s managmenet involvement
- Alignment of national rare disease plans
- Address cross-cutting issues within the ERNs
- Legal issues
- Integrate patient registration
- Unify cross-border data exchange (EHDS)
- Visibility and recognition for ENRs and HCPs
- Increase the ERN’s visibility
- Foster National support
- Long-Term funding structure
- Establish a legal entity for ERNs
- Lack of resources
- Secure financial support from member states
- Increase recodnition and support to healthcare professionals
- Patient empowerment
- Recognise patient representatives as ERN members
- Allocate ERN resources to support patient representatives
- Geographical distribution
- Include more expert centres from underrepresented countries
- Implement shared learning activities across Europe
- Revision of the CPMS
- Solve technical difficulties to make it more user-friendly
- Implement a payment system for CPMS usage
- Revision of the monitoring indicators
- Establish a common system to measure the impact of ERN contributions
- Strengthen the monitoring system
- Define a common methodology for result analysis
