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 European Research Networks. This will maximize the adherence of RITA members to common standards and foster the set-up of a new registry for sharing clinical data provided by RITA registries according to the European Commission’s Joint Research Centre (JRC) standards.
Research in rare immune diseases (RID) is constrained by the lack of sufficiently large cohorts and data resources in any single country. Web access to the MeRITA registry will overcome this important obstacle and enable larger evidence-based research. Data about patients with RID from several rare disease registries will be pooled in order to achieve a sufficient sample size for epidemiological and/or clinical research in the field and healthcare quality evaluation and planning. The confidentiality and protection of personal data is secured in the MeRITA registry by full anonymisation of data.
The MeRITA project will support the activity of the RITA network, within more than 60 national and international registries identified.
The MeRITA project will potentially affect the quality of life of all the patients with RID across Europe and beyond.