Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey

Riccardo Papa, Andrew Cant, Christoph Klein, Mark A Little, Nico M Wulffraat, Marco Gattorno, Nicolino Ruperto

Research output: Contribution to journalArticlepeer-review

Abstract

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.

Original languageEnglish
Pages (from-to)33
JournalOrphanet Journal of Rare Diseases
Volume15
Issue number1
DOIs
Publication statusPublished - Jan 30 2020

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