In April 2018, an online survey was sent to all 126 RITA members in order to obtain a census of the registries and researches networks among the ERN. Data about 52 different registries were collected across 14 European countries. Almost 50% of registries collect data on autoimmune diseases, while others are dedicated to primary immunodeficiencies or autoinfalmmatory 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%) enrols patients from National boundaries.
The survey of registries clearly showed how the RITA network needs a common plan for inventory of the clinical data about patients with RID. Furthermore, registration of key parameters as patient safety, including 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) or quality of life measures can be addressed within the network.
See below the list of registries participating in the MeRITA project.