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ERN Evaluation or AMEQUIS

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:

  • If the HCP continues to provide specialised and quality care,

  • If the HCP team maintains the necessary levels of activity and experience,

  • What the contribution of the HCP team has been to the Network,

  • The value of the ERN for the HCP.

To summarise the process, 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. Please find below a timeline for this process:


Dec-22 - Feb-23

Self-evaluation by HCPs.

 Please find here the link to the template Evaluation Manual and Evaluation Toolbox.

Feb-23 - May-23

Document review, virtual interviews with ERNs, and on-site audits in a sample of the HCPs

May-23 - Sept-23

Draft reports, comments and amendments, development of improvement plan (if needed)

final reports

Sept-23 - Sept-24

Implementation of improvement plan for members where mandatory. 

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