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 an annual Continuous Monitoring Exercise (from 2018) and a 5-year evaluation process led by an external Independent Evaluation Body (IEB). The first 5-year evaluation process with founding HCP members of Endo-ERN took place during 2023.
During 2023 the 5-year evaluation process used the Assessment, Monitoring, Evaluation, and Quality Improvement System (AMEQUIS).
Endo-ERN was also reviewed by the IEB and that review included feedback from network HCPs.