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

doi:10.1186/s13023-020-1308-x

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

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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 language	English
Article number	33
Pages (from-to)	1-7
Journal	Orphanet Journal of Rare Diseases
Volume	15
Issue number	1
DOIs	https://doi.org/10.1186/s13023-020-1308-x
Publication status	Published - 30 Jan 2020

Keywords

Autoimmune disorders
Autoinflammatory diseases
Disease registry
European research network
Primary immunodeficiency

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

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.",

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author = "Riccardo Papa and Andrew Cant and Christoph Klein and Little, {Mark A} and Wulffraat, {Nico M} and Marco Gattorno and Nicolino Ruperto",

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AU - Papa, Riccardo

AU - Cant, Andrew

AU - Klein, Christoph

AU - Little, Mark A

AU - Wulffraat, Nico M

AU - Gattorno, Marco

AU - Ruperto, Nicolino

PY - 2020/1/30

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N2 - 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.

AB - 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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KW - Autoinflammatory diseases

KW - Disease registry

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KW - Primary immunodeficiency

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

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