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Update on the profile of the EUSTAR cohort: an analysis of the EULAR Scleroderma Trials and Research group database
  1. Florian M P Meier1,
  2. Klaus W Frommer1,
  3. Robert Dinser1,
  4. Ulrich A Walker2,
  5. Laszlo Czirjak3,
  6. Christopher P Denton4,
  7. Yannick Allanore5,
  8. Oliver Distler6,
  9. Gabriela Riemekasten7,
  10. Gabriele Valentini8,
  11. Ulf Müller-Ladner1,
  12. EUSTAR Co-authors
  1. 1Department of Internal Medicine and Rheumatology, Justus-Liebig-University Gießen, Kerckhoff-Klinik, Bad Nauheim, Germany
  2. 2Department of Rheumatology, Basle University, Felix Platter Spital, Basel, Switzerland
  3. 3Department of Rheumatology and Immunology, University of Pecs, Pecs, Hungary
  4. 4Department of Rheumatology, RFH, London, UK
  5. 5Department of Rheumatology A, Paris Descartes University, Cochin Hospital, Paris, France
  6. 6Department of Rheumatology, University Hospital, Zurich, Switzerland
  7. 7Department of Rheumatology and Clinical Immunology, Charité University Hospital, German Rheumatism Research Centre, a Leibniz Institute, Berlin, Germany
  8. 8Department of Rheumatology, Second University of Naples, Naples, Italy
  1. Correspondence to Ulf Müller-Ladner, Department of Internal Medicine and Rheumatology Justus-Liebig-University Gießen Kerckhoff-Klinik, Benekestraße 2-8 D-61231, Bad Nauheim, Germany; u.mueller-ladner@ kerckhoff-klinik.de

Abstract

Objectives Systemic sclerosis (SSc) is a rare disease requiring multicentre collaboration to reveal comprehensive details of disease-related causes for morbidity and mortality.

Methods The European League Against Rheumatism (EULAR) Scleroderma Trials and Research (EUSTAR) group initiated a database to prospectively gather key data of patients with SSc using a minimal essential dataset that was reorganised in 2008 introducing new items. Baseline visit data of patients who were registered between 2004 and 2011 were analysed using descriptive statistics.

Results In June 2011, 7655 patients (2838 with diffuse cutaneous (dc) and 4481 with limited cutaneous (lc) SSc who fulfilled the American College of Rheumatology diagnostic criteria had been registered in 174 centres, mainly European. The most prominent hallmarks of disease were Raynaud's phenomenon (96.3%), antinuclear antibodies (93.4%) and a typical capillaroscopic pattern (90.9%). Scleroderma was more common on fingers and hands than on any other part of the skin. Proton pump inhibitors (65.2%), calcium channel blockers (52.7%), and corticosteroids (45.3%) were most often prescribed. Among the immunosuppressant agents, cyclophosphamide was used more often in dcSSc than in lcSSc.

Conclusions The EUSTAR database provides an abundance of information on the true clinical face of SSc that will be helpful in improving the classification of SSc and its subsets and for developing more specific therapeutic recommendations.

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Footnotes

  • Collaborators EUSTAR Co-authors. (See online supplementary material for list of co-authors).

  • Funding EULAR.

  • Competing interests EUSTAR is supported by EULAR. There are no other competing interests.

  • Ethics approval Approval of the local ethics committee has been obtained by each participating centre

  • Provenance and peer review Not commissioned; externally peer reviewed.

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