Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey.
The Rare Immunodeficiency, AutoInflammatory and AutoImmune Disease (RITA) network is a European Research Network (ERN) that brings together the leading centres for rare immune disorders. On April 2018 an online survey was sent to all RITA members in order to facilitate the harmonization of data collection in rare immune disorders registries. Currently, as many as 52 different registries collect data on rare immune disorders, of whom 30 (58%) are dedicated primarily to autoimmune diseases, 15 (29%) to primary immunodeficiencies and 12 (23%) to autoinflammatory disorders. Improving data on patient safety, outcome, and quality of life measures is warranted to unfold the full potential of RITA registries.
['Papa|Riccardo|R|', 'Cant|Andrew|A|', 'Klein|Christoph|C|', 'Little|Mark A|MA|', 'Wulffraat|Nico M|NM|', 'Gattorno|Marco|M|', 'Ruperto|Nicolino|N|', '|||']
D003695:Delivery of Health Care D006801:Humans D007153:Immunologic Deficiency Syndromes D011788:Quality of Life D035583:Rare Diseases D012042:Registries
European research network Primary immunodeficiency Autoimmune disorders Autoinflammatory diseases Disease registry