Literature DB >> 24121165

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

Ulf Müller-Ladner1, Alan Tyndall, Laszlo Czirjak, Christopher Denton, Marco Matucci-Cerinic.   

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.

Entities:  

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

Mesh:

Year:  2013        PMID: 24121165     DOI: 10.1136/annrheumdis-2013-203997

Source DB:  PubMed          Journal:  Ann Rheum Dis        ISSN: 0003-4967            Impact factor:   19.103


  6 in total

Review 1.  Systemic sclerosis phase III clinical trials: Hope on the horizon?

Authors:  Martin Aringer; Christopher P Denton
Journal:  J Scleroderma Relat Disord       Date:  2018-05-28

2.  Prediction of improvement in skin fibrosis in diffuse cutaneous systemic sclerosis: a EUSTAR analysis.

Authors:  Rucsandra Dobrota; Britta Maurer; Nicole Graf; Suzana Jordan; Carina Mihai; Otylia Kowal-Bielecka; Yannick Allanore; Oliver Distler
Journal:  Ann Rheum Dis       Date:  2016-03-25       Impact factor: 19.103

3.  Opportunities and challenges in rheumatology research in Central Europe.

Authors:  Zoltán Szekanecz; Branimir Anic; Gábor Héjj; Iztok Holc; Aniella Hunka; Eugene Kucharz; Klaus Machold; Miroslav Mayer; Artur Pahor; Rudolf Puchner; Jozef Rovensky; Ladislav Senolt; Alena Tuchynova; Jiri Vencovsky; Josef S Smolen
Journal:  Arthritis Res Ther       Date:  2017-09-04       Impact factor: 5.156

Review 4.  Recent advances in managing systemic sclerosis.

Authors:  Martin Aringer; Anne Erler
Journal:  F1000Res       Date:  2017-01-30

5.  Pain chronification and the important role of non-disease-specific symptoms in patients with systemic sclerosis.

Authors:  Petra Hoederath; Oliver Distler; Caroline Evers; Suzana Jordan; Britta Maurer; Mike Oliver Becker; Carina Mihai; Rucsandra Dobrota
Journal:  Arthritis Res Ther       Date:  2021-01-19       Impact factor: 5.156

6.  Health Assessment Questionnaire-Disability Index (HAQ-DI) use in modelling disease progression in diffuse cutaneous systemic sclerosis: an analysis from the EUSTAR database.

Authors:  Yannick Allanore; Sylvie Bozzi; Augustin Terlinden; Doerte Huscher; Caroline Amand; Christina Soubrane; Elise Siegert; László Czirják; Patricia E Carreira; Eric Hachulla; Elisabetta Zanatta; Mengtao Li; Paolo Airò; Fabian A Mendoza; Edoardo Rosato; Oliver Distler
Journal:  Arthritis Res Ther       Date:  2020-10-28       Impact factor: 5.156

  6 in total

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