Loading...
Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey.
Papa, Riccardo Cant, Andrew Klein, Christoph Little, Mark A Wulffraat, Nico M Gattorno, Marco Ruperto, Nicolino
Papa, Riccardo
Cant, Andrew
Klein, Christoph
Little, Mark A
Wulffraat, Nico M
Gattorno, Marco
Ruperto, Nicolino
Advisors
Editors
Other Contributors
Departments
Date
2020-01-30
Date Submitted
Keywords
Autoimmune disorders
Autoinflammatory diseases
Disease registry
European research network
Primary immunodeficiency
Autoinflammatory diseases
Disease registry
European research network
Primary immunodeficiency
Other Subjects
Subject Mesh
Planned Date
Start Date
Collaborators
Principal Investigators
Files
Loading...
s13023-020-1308-x.pdf
Adobe PDF, 275.33 KB
Alternative Titles
Publisher
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.
Language
en
Citation
ISSN
eISSN
1750-1172
ISBN
DOI
10.1186/s13023-020-1308-x
PMID
32000824