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Update on the profile of the EUSTAR cohort : an analysis of the EULAR Scleroderma Trials and Research group database : concise report
Meier, Florian M P ...
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. Baselinevisit 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 whofulfilled the American College of Rheumatology diagnostic criteria had beenregistered 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 onfingers 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 faceof SSc that will be helpful in improving the classification of SSc and itssubsets and for developing more specific therapeutic recommendations.
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