ERN 5 Yr evaluation (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:

Timeline HCP

STAGE 1: 19 December 2022 - 19 February 2023

STAGE 2: 20 February 2023 - 18 May 2023

  • Document review
  • Virtual interviews with ERNs
  • On-site audits in a sample of the HCPs

STAGE 3: 28 May 2023- 04 September 2023

  • Draft reports
  • Comments and amendments
  • Improvement plan (if needed)
  • final reports

The ERN CRANIO Coordination Team will send Full Members more detailed explanations of what is required before December 19th 2023.