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 coll...

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Autores principales: Papa, Riccardo, Cant, Andrew, Klein, Christoph, Little, Mark A., Wulffraat, Nico M., Gattorno, Marco, Ruperto, Nicolino
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2020
Materias:
Letter to the Editor
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6993334/
https://www.ncbi.nlm.nih.gov/pubmed/32000824
http://dx.doi.org/10.1186/s13023-020-1308-x
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author Papa, Riccardo
Cant, Andrew
Klein, Christoph
Little, Mark A.
Wulffraat, Nico M.
Gattorno, Marco
Ruperto, Nicolino
author_facet Papa, Riccardo
Cant, Andrew
Klein, Christoph
Little, Mark A.
Wulffraat, Nico M.
Gattorno, Marco
Ruperto, Nicolino
author_sort Papa, Riccardo
collection PubMed
description 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.
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spelling pubmed-69933342020-02-04 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 Orphanet J Rare Dis Letter to the Editor 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. BioMed Central 2020-01-30 /pmc/articles/PMC6993334/ /pubmed/32000824 http://dx.doi.org/10.1186/s13023-020-1308-x Text en © The Author(s). 2020 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Letter to the Editor
Papa, Riccardo
Cant, Andrew
Klein, Christoph
Little, Mark A.
Wulffraat, Nico M.
Gattorno, Marco
Ruperto, Nicolino
Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey
title Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey
title_full Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey
title_fullStr Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey
title_full_unstemmed Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey
title_short Towards European harmonisation of healthcare for patients with rare immune disorders: outcome from the ERN RITA registries survey
title_sort towards european harmonisation of healthcare for patients with rare immune disorders: outcome from the ern rita registries survey
topic Letter to the Editor
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6993334/
https://www.ncbi.nlm.nih.gov/pubmed/32000824
http://dx.doi.org/10.1186/s13023-020-1308-x
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