5-year evaluation of ERNs and HCP members

The objective of the European Reference Networks is to ensure accessible diagnosis and treatment for rare diseases. This care should be consistent across the EU/EEA and rare disease type. To ensure this quality of care, a review process was planned from the inception of the network with a 5-year evaluation process and an ongoing Continuous Monitoring Programme.

When the ERNs were established, it was agreed that an evaluation would be conducted every five years after their initial approval (or last evaluation) to determine the worth or significance of the work and actions developed by the ERNs. In 2022/2023, both the ERNs as a network and their member HCPs from the 1st call will undergo a formal performance evaluation. The evaluation process will be transparent and independent from the policy making, and developed by an Independent Evaluation Body (IEB), appointed by the European Commission.

The evaluation process will address both the ERN as a network, and its members, as individual Health Care Providers (HCPs).

The general objective of the Network evaluation is to assess:

      • how is the ERN covering the areas it stated it would (including geographical, diseases and conditions, and patient population)
      • the stage of development of the network, regarding its purpose, governance, leadership, learning and sustainability as well as its level of integration into national health systems
      • to what degree has the ERN completed the planned activities
      • what has been the value added to the patients’ experience, both receiving services with each member, and their pathway through the network.

The evaluation of the individual HCPs will assess:

      • whether the HCP continues to provide specialized and quality care
      • whether the HCP team maintains the necessary levels of activity and experience
      • the contribution of the HCP team to the ERN
      • the value the ERN has had for the HCP.

The 5-year evaluation process, consisting of 4 stages, started on November 2022 and will end on September 2023.

The Independent Evaluation Body (IEB), appointed by the European Commission for this process is Consortium IDOM & ACSA International. The evaluation will involve all the ERNs as network and their full members who joined the network in 2017.

Each HCP member should complete the self-evaluation trough the online tool (OEIT), a dedicated platform which can be accessed via the following URL: www.ern-assessment.com.

Stage 2

Stage 3

Stage 4

Continuous Monitoring Programme

The Continuous Monitoring Programme started in 2018 to evaluate the performance of ERNs and ensure they are working towards their goal. With this aim, the European Commission devised a set of 18 core performance indicators to ensure that both the network and its members continue to meet the requirements and high standards expected of all ERNs in contributing to the rare disease community. At least once a year all HCPs involved in the ERNs provide insight into their data.