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Ten years EULAR Scleroderma Research and Trials (EUSTAR): what has been achieved?
  1. Ulf Müller-Ladner1,
  2. Alan Tyndall2,
  3. Laszlo Czirjak3,
  4. Christopher Denton4,
  5. Marco Matucci-Cerinic5,
  6. on behalf of EUSTAR centres
  1. 1Department of Rheumatology and Clinical Immunology, Justus-Liebig University Giessen, Kerckhoff Clinic, Bad Nauheim, Germany
  2. 2Rheumatologische Universitätsklinik, Felix Platter Spital, Basel, Switzerland
  3. 3Department of Immunology and Rheumatology, Faculty of Medicine, University of Pécs, Pécs, Hungary
  4. 4Centre for Rheumatology, Royal Free and University College London Medical School, London, UK
  5. 5Department of Medicine, Section of Rheumatology, University of Florence, Firenze, Italy
  1. Correspondence to Professor Ulf Müller-Ladner, Department of Rheumatology and Clinical Immunology, Justus-Liebig University Giessen, Kerckhoff Clinic, Benekestrasse 2, Bad Nauheim 61231, Germany; u.mueller-ladner{at}kerckhoff-klinik.de

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.

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

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