Registries in systemic sclerosis: a worldwide experience

Registries in systemic sclerosis: a worldwide experience

Author Galluccio, Felice Google Scholar
Walker, Ulrich A. Google Scholar
Nihtyanova, Svetlana Google Scholar
Moinzadeh, Pia Google Scholar
Hunzelmann, Nicholas Google Scholar
Krieg, Thomas Google Scholar
Steen, Virginia Google Scholar
Baron, Murray Google Scholar
Sampaio-Barros, Percival Google Scholar
Kayser, Cristiane Autor UNIFESP Google Scholar
Nash, Peter Google Scholar
Denton, Chris P. Google Scholar
Tyndall, Alan Google Scholar
Mueller-Ladner, Ulf Google Scholar
Matucci-Cerinic, Marco Google Scholar
Institution Univ Florence
Univ Basel
Royal Free Hosp
Univ Cologne
Georgetown Univ
McGill Univ
Universidade de São Paulo (USP)
Universidade Federal de São Paulo (UNIFESP)
Univ Queensland
Univ Giessen
Abstract SSc is a multisystem disease characterized by an unpredictable course, high mortality and resistance to therapy. the complexity and severity of SSc is a growing burden on the health-care systems. As a result, researchers are seeking new therapeutic strategies for effectively managing these patients. Disease registries are used to support care management efforts for groups of patients with chronic diseases and are meaningful to capture and track key patient information to assist the physicians in managing patients. for these reasons, SSc surveys, research associations and consortiums are pivotal to conduct ongoing research and data collection to enhance disease knowledge and support research projects. Currently, there are several national SSc registries in the UK, Germany, USA, Canada, Brazil and Australia. There is also an international registry established by the European League Against Rheumatism scleroderma trial and research (EUSTAR) called minimal essential data set (MEDS) Online, which collects data from over 8000 patients from 92 centres worldwide, including 21 European centres and 9 centres outside Europe. By collecting, analysing and disseminating data on disease progression and patient responses to long-term disease management strategies, registries help to improve understanding of the disease and keep medical professionals up to date on the latest advances.
Keywords Systemic sclerosis
Disease registries
Language English
Sponsor Actelion
Date 2011-01-01
Published in Rheumatology. Oxford: Oxford Univ Press, v. 50, n. 1, p. 60-68, 2011.
ISSN 1462-0324 (Sherpa/Romeo, impact factor)
Publisher Oxford Univ Press
Extent 60-68
Access rights Open access Open Access
Type Review
Web of Science ID WOS:000285193500009

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