MeRITA - a metadata registry for the ERN-RITA

MeRITA’s Goals

The general objective of the “Metadata registry for the ERN RITA” (MeRITA) project is the promotion of interoperability of existing European already identifiedregistries that collect patient data from within any of the 4 disease streams that ERN-RITA focuses on: Primary Immunodeficiencies, Autoinflammatory Disorders, Autoimmune & Paediatric Rheumatic Diseases and potentially also with registries from other European Reference Networks. This will maximize the adherence to common standards and foster the set-up of a new registry for sharing clinical data provided by The European Reference Network that aims at improving the care of patients with Rare Immunological Disorders according to the European Commission’s Joint Research Centre (JRC) standards.

Why MeRITA?

Research in rare immune disorders (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 significant obstacle and enable larger evidence-based research. Data from patients with RID from several rare disease registries will be pooled in order to achieve a sufficient sample size for epidemiological and/or clinical field research as well as improvement of healthcare quality ,evaluation and planning. The confidentiality and protection of personal data is secured in the MeRITA registry by full anonymisation of data.

MeRITA’s Impact

The MeRITA project will support the activity of the The European Reference Network that aims at improving the care of patients with Rare Immunological Disorders with European and International existing Registries.

The MeRITA project will potentially affect the quality of life of all the patients with RID across Europe and beyond.