Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey.
Authors
Papa, RiccardoCant, Andrew
Klein, Christoph
Little, Mark A
Wulffraat, Nico M
Gattorno, Marco
Ruperto, Nicolino
Issue Date
2020-01-30Keywords
Autoimmune disordersAutoinflammatory diseases
Disease registry
European research network
Primary immunodeficiency
Metadata
Show full item recordJournal
Orphanet journal of rare diseasesDOI
10.1186/s13023-020-1308-xPubMed ID
32000824Abstract
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.Item Type
OtherLanguage
enEISSN
1750-1172ae974a485f413a2113503eed53cd6c53
10.1186/s13023-020-1308-x
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