The FAIR4Rare evaluation project
Concurrently, from 01 April 2023 to 31 March 2026, the evaluation project FAIR4Rare, funded by the Innovationsausschuss des Gemeinsamen Bundesausschusses, was carried out. Project partners from healthcare research, clinical settings, registry operators, and patient advocacy organizations assessed the extent to which NARSE is accepted by users and identified necessary improvements to address the specific needs of patients with rare diseases.
FAIR4Rare focused on three specific diseases that differ significantly in terms of prevalence, type of care, and existing registries: fragility diseases, genetic forms of obesity, and cystic fibrosis.
The final report from FAIR4Rare will be published at the end of 2026.
We would like to thank our project partners for their excellent collaboration.