VASCERN News
23 July 2024
Revision of Rare Vascular Tumors in the Orphanet Database
The first five-year evaluation of the ERNs and their HCP Full Members (members that are in the ERNs since 2017) is scheduled to start in September 2022 and finish by the end of August 2023. This evaluation will be part of the new Assessment, Monitoring, Evaluation and Quality Improvement System for the European Reference Networks (AMEQUIS), and is set by the European Commission.
The evaluations are a legal obligation with the aim of determining the significance of the work and actions developed by the ERNs. There will be an evaluation of the overall networks to rate the structure, maturity, activity and impact of the ERNs. The evaluation of the individual Members of the Network should assess:
- Whether the HCP continues to provide specialized and quality care,
- Whether the HCP team maintains the necessary levels of activity and experience, and
- The contribution of the HCP?
Each ERN and each of the ERN’s healthcare providers will be asked to perform a self-assessment and undergo a technical evaluation, which includes a document review and virtual and/or on-site interviews. The technical evaluation of the network will include virtual interviews with ERN and work-package coordinators, as well as patient representatives. Audits might also be conducted by the evaluators.
For your reference, please find attached the evaluation toolbox that holds the criteria by which the network and the centres will be evaluated, self-evaluation forms, document and other evidence to be prepared, and other relevant information. Although the process has not started and the AMEQUIS system is not available yet, we strongly recommend that you start preparing, i.e. collecting the documents for your centre and appointing responsible staff, both from clinic and administration.
We are aware of the administrative burden this places on our members, but please remember that securing funding for the future will require each of us to invest the time and resources. The long-term benefit of improved care for rare disease patients throughout Europe will depends on the action we take now.
Documentation: