An Interim Report of the Scleroderma Clinical Trials Consortium Working Groups. Journal of scleroderma and related disorders Baron, M., Kahaleh, B., Bernstein, E. J., Chung, L., Clements, P. J., Denton, C., Domsic, R. T., Ferdowsi, N., Foeldvari, I., Frech, T., Gordon, J. K., Hudson, M., Johnson, S. R., Khanna, D., McMahan, Z., Merkel, P. A., Narain, S., Nikpour, M., Pauling, J. D., Ross, L., Valenzuela Vergara, A. M., Vacca, A. 2019; 4 (1): 17-27


The Scleroderma Clinical Trials Consortium (SCTC) represents many of the clinical researchers in the world who are interested in improving the efficiency of clinical trials in Systemic Sclerosis (SSc). The SCTC has established 11 working groups (WGs) to develop and validate better ways of measuring and recording multiple aspects of this heterogeneous disease. These include groups working on arthritis, disease damage, disease activity, cardiac disease, juvenile SSc, the gastrointestinal tract, vascular component, calcinosis, scleroderma renal crisis, interstitial lung disease, and skin measurement. Members of the SCTC may join any one or more of these groups. Some of the WGs have only recently started their work, some are nearing completion of their mandated tasks and others are in the midst of their projects. All these projects, which are described in this paper, will help to improve clinical trials and observational studies by improving or developing better, more sensitive ways of measuring various aspects of the disease. As Lord Kelvin stated, "To measure is to know. If you cannot measure it you cannot improve it." The SCTC is dedicated to improving the lives of patients with SSc and it is our hope that the contributions of the WGs will be one important step in this process.

View details for DOI 10.1177/2397198318783926

View details for PubMedID 30906878

View details for PubMedCentralID PMC6428445