Systemic sclerosis (SSc) is an orphan, multiorgan disease affecting the connective tissue of the skin and all internal organs. Interstitial lung disease is a frequent morbidity and mortality-driving manifestation in systemic sclerosis. This observational trial (OT) is part of the collaborative project "DeSScipher", one out of five OTs to decipher the optimal management of systemic sclerosis. Aim of this observational try is to identify: * The state of clinical practice in Europe for prevention and treatment of interstitial lung disease and its impact on lung function and disease progression * The potential predictors and confounders for response to therapy
Patients are routinely evaluated every 3 months over a 12-months period by medical history, physical examination, pulmonary function tests, VAS lung score and SF-36, SHAQ. Also, their medication and possible medication changes will be recorded.
Study Type
OBSERVATIONAL
Enrollment
1,372
Université Paris Descartes, Hôpital Cochin, Service de Rhumatologie A & INSERM 1016
Paris, France
RECRUITINGJustus-Liebig-University Gießen, Kerckhoff Clinic, Departement of Rheumatology and Clinical Immunology
Bad Nauheim, Germany
RECRUITINGCharité Universitätsmedizin Berlin, Charité Centrum 12 für Innere Medizin und Dermatologie, Medizinische Klinik mit Schwerpunkt Rheumatologie und Klinische Immunologie
Berlin, Germany
RECRUITINGCentre for Pediatric Rheumatology, Klinikum Eilbek
Hamburg, Germany
RECRUITINGPecsi Tudomanyegyetem - University of Pecs
Pécs, Hungary
RECRUITINGUniversity of Florence, Denothe Centre, Division of Rheumatology AOUC, Department of Biomedicine
Florence, Italy
RECRUITINGPoliclinico, Via Pansini
Napoli-Italia, Italy
RECRUITINGFelix-Platter Spital, University of Basel
Basel, Switzerland
RECRUITINGUniversity of Zurich, Department of Rheumatology
Zurich, Switzerland
RECRUITINGThe Universitiy of Leeds, Division of Rheumatic and Musculoskeletal Disease, St James's University Hospital
Leeds, United Kingdom
RECRUITING...and 1 more locations
Proportion of patients with 10% decline in FVC
The proportion of patients with ILD progression as defined by a 10% decline in FVC within 1 year of therapy
Time frame: 1 year
The time to a 15% decline in DLCO or a drop <55% of predicted lung function
Time frame: 1 year
The mortality due to lung fibrosis
Time frame: 1 year
The need for oxygen support
Time frame: 1 year
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