5-Year Evaluation of ERNs and Full Members

The first five-year evaluation of the ERNs and their Full Members (members that are in the ERNs since 2017) is scheduled to start end of 2022 and finish after one year.

There will be an evaluation of the overall network ERN RARE-LIVER and additionally of the individual Members of the Network. It 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.

For more information, please consult the following documents:

Evaluation Manual
Evaluation Toolbox


Continuous Monitoring of ERNs

The EU Member States, ERNs and the European Commission have identified the need to establish a solid and valid continuous monitoring and assessment system of the ERNs to allow a closer follow up of the activities performed by the networks. This system should help to build a quality improvement system, to define appropriate outcomes of the ERNs, to identify areas of success and potential pitfalls and to demonstrate the value of the ERNs, ultimately learning from the experience.

Please find all indicators and instructions on how to collect data here .

The data collection takes place yearly. The deadline for handing in data for the previous year is always mid-March.

Monitoring of Patient Numbers

The total number of patients referred to your Centre including visits to outpatient’s clinics, hospital discharges and emergencies, coming from both national and international referrals.

  • Diseases_Monitoring