Each year, every healthcare provider (HCP) member of ERN eUROGEN has a responsibility to provide information for the previous year on the number of patients with rare diseases that it is treating, as well as other activities undertaken to support the network. This information is then collated by the Coordination Team and submitted to the European Commission. The results for each ERN are now published annually by the European Commission. The 2025 report can be found here. As part of its grant agreement, ERN eUROGEN regularly undertakes self-evaluation, including a yearly network survey that is sent to all of its members. You can download the ERN eUROGEN Evaluation Plan and 2024-25 ERN eUROGEN Evaluation Report by clicking the links. The ERNs’ legal framework also requires that ERNs and their Full Members are independently evaluated every five years. The first evaluation was officially launched in December 2022. The evaluation was an opportunity to learn and improve the existing system, identify lessons learnt and areas for improvement, and ultimately reveal if the ERNs are delivering the expected benefits for patients. This is part of the AMEQUIS framework, 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. AMEQUIS stands for Assessment, Monitoring, Evaluation and Quality Improvement System. Whilst the AMEQUIS project has since concluded, it produced a refined process and criteria to assess the applications of new HCPs and new ERNs (the ‘A’ part of AMEQUIS). Furthermore, it will allow the ERNs and their members to monitor, evaluate, and improve their activities systematically to achieve a higher level of performance, spotting areas of best practice and areas for improvement (the ‘MEQUIS’ part of AMEQUIS). Full information on the process is available on the EC’s webpage on the Evaluation of the European Reference Networks, including the legal framework, timeline, evaluation process, and documentation. The first evaluation was performed both at the Network level and the level of each individual Full Member of the ERN, and only included those full-member HCPs who joined the network in 2017. The next 5-year evaluation is due to start in 2027 and will be split into three distinct sections, rather than two. These will be, as before, the Network and HCP levels, with the addition of the new hospital section. This change will mean that hospitals that are part of multiple ERNs do not need to duplicate reporting regarding their overarching care processes.
Data Collection
Evaluation
Data Collection & Evaluation
