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Ann Rheum Dis. 2014 Feb;73(2):324-7. doi: 10.1136/annrheumdis-2013-203997. Epub 2013 Oct 11.

Ten years EULAR Scleroderma Research and Trials (EUSTAR): what has been achieved?

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  • 1Department of Rheumatology and Clinical Immunology, Justus-Liebig University Giessen, Kerckhoff Clinic, , Bad Nauheim, Germany.

Abstract

Ten years ago a group of researchers interested in and dedicated to the field of systemic sclerosis started a unique experiment called European League Against Rheumatism (EULAR) Scleroderma Trials And Research (EUSTAR) that was designed to establish a large-scale database in a rare disease to facilitate the exact characterisation of this debilitating disease, spread the knowledge even beyond the borders of Europe and stimulate innovative research targeting the major problems of the affected patients. This EUSTAR experiment, with all its facets, including the creation of a large-scale database, the initiation of more than 40 investigator-driven clinical and basic science projects, the teaching of more than 400 young clinicians in the field of systemic sclerosis and the realisation of multicenter EU grants, which were all facilitated by an initial research grant from EULAR, is outlined and commented upon by the members of the steering committee in this viewpoint article on behalf of the now more than 150 contributing centres and the international systemic sclerosis patients' association, the Federation of European Scleroderma Associations.

KEYWORDS:

Epidemiology; Outcomes research; Patient perspective; Qualitative research; Systemic Sclerosis

PMID:
24121165
[PubMed - indexed for MEDLINE]
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