In April 2018, an online survey was sent to all 126 Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease (RITA) members in order to obtain a census of the registries and research networks in the European Reference Network (ERN). Data from 52 different registries were collected across 14 European countries. Almost 50% of the registries collect data on autoimmune diseases, while others are dedicated to primary immunodeficiencies or autoinflammatory diseases (respectively 15 registries, 29%, and 12 registries, 23%). Fifteen registries (29%) enrolled patients with a single specific disorder and numerous rare immune diseases do not have any registry anywhere in Europe. The majority of registries (69%) enroll patients within their national boundaries.

The survey of registries clearly showed how the The European Reference Network that aims at improving the care of patients with Rare Immunological Disorders needs a common plan for the inventory of clinical data from patients with RID. Furthermore, registration of key parameters such as patient safety, the use of medicines and medical technologies, communication issues and breaches in continuity of care, as well as outcome data (i.e. mortality, morbidity and disease complications) and quality of life measures can be addressed within the network.

See below for the list of registries participating in the MeRITA project.