MERITA PROJECT: A METADATA REGISTRY FOR THE ERN RITA

ended

The general objective of the “Metadata registry for the ERN RITA” (MERITA) project is promoting the interoperability of the RITA network registries so far identified and potentially with the other ERNs, maximizing the adherence of RITA members to the ERDRI platform and developing a new registry for sharing clinical data provided by RITA registries according the European Commission’s Joint Research Centre standards with the unique expertise gained by the PRINTO network is the interoperability of its own registries. MERITA project will potentially affect quality of life of all the patients with rare immune diseases across Europe and beyond. MERITA project will support the activity of the RITA network that includes 126 members of whom 45 are HCPs and eight are patients and family organizations. In the ERN RITA more than 50 national and international registries enrol more than 55,000 patients from 14 European countries and many others from several other countries outside Europe. The MERITA project will also confront with the project of the other ERNs in order to harmonise as much as possible the different initiatives. The overall outcome will serve also as a reference tools for pharmaceutical companies aiming to develop new target for the treatment of patients with rare immune diseases. Overall aim of the MERITA project is therefore to reach different stakeholders including but not limited to health professionals, patients, patient organisations, other ERNs and industries.