The process to evaluate the ERNs and their Full Members will soon officially begin. This is part of the AMEQUIS framework (Assessment, Monitoring, Evaluation and Quality Improvement System), which aims to ensure that ERNs remain responsive to the needs of the rare disease patient community, deliver on their objectives, and improve their performance over time.
An essential part of this process is evaluating the ERNs and their Full Members every five years. The evaluation will be performed both at the Network level and the level of each individual Full Member of the ERN.
The ERN CRANIO Coordination Team will handle the network-level evaluation.
Regarding the Full Member evaluation, only those who joined the network in 2017 are included in the evaluation process at this time. It will aim to assess the following:
In practical terms, the ERN CRANIO Coordination Team will send Full Members more detailed explanations of what is required in due course.
To summarise these, an Independent Evaluation Body (IEB) has been appointed by the European Commission to oversee the whole process. Full Members will be initially required to do a self-evaluation based on seven thematic areas, each comprising several measurable elements for which you will need to provide evidence. After that, this will be returned to the IEB, who will organise an online or on-site audit with a sample of full members from each ERN to follow up on those self-evaluations.
The ERN CRANIO Coordination Team will follow this process closely and help Full Members as much as possible with the evaluation.