An interim report of the Scleroderma Clinical Trials Consortium working groups

Author:

Baron Murray1,Kahaleh Bashar2,Bernstein Elana J3,Chung Lorinda4,Clements Philip J56,Denton Christopher7,Domsic Robyn T8,Ferdowsi Nava9,Foeldvari Ivan10,Frech Tracy11,Gordon Jessica K12,Hudson Marie1,Johnson Sindhu R13,Khanna Dinesh14,McMahan Zsuzsannah15,Merkel Peter A1617,Narain Sonali18,Nikpour Mandana9,Pauling John D19,Ross Laura9,Vergara Antonia Maria Valenzuela4,Vacca Alessandra20

Affiliation:

1. Division of Rheumatology, Jewish General Hospital, Montreal, QC, Canada

2. Division of Rheumatology, University of Toledo Medical Center, Toledo, OH, USA

3. College of Physicians and Surgeons, Columbia University, New York, NY, USA

4. Division of Immunology & Rheumatology, School of Medicine, Stanford University, Palo Alto, CA, USA

5. Ronald Reagan UCLA Medical Center, University of California, Los Angeles, Los Angeles, CA, USA

6. University College London, London, UK

7. Institute of Immunity and Transplantation, University College London, London, UK

8. Arthritis and Autoimmunity Center, University of Pittsburgh Medical Center, Pittsburgh, PA, USA

9. Department of Rheumatology, St Vincent’s Hospital, Melbourne, VIC, Australia

10. Hamburg Centre for Pediatric Rheumatology, Hamburg, Germany

11. Division of Rheumatology, School of Medicine, University of Utah, Salt Lake City, UT, USA

12. Division of Rheumatology, Hospital for Special Surgery, New York, NY, USA

13. Division of Rheumatology, Toronto Western Hospital, Toronto, ON, Canada

14. Division of Rheumatology, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, USA

15. Division of Rheumatology, Johns Hopkins Hospital, Baltimore, MD, USA

16. Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA

17. Department of Biostatistics, Epidemiology, and Informatics, University of Pennsylvania, Philadelphia, PA, USA

18. Division of Rheumatology, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Hempstead, NY, USA

19. Department of Rheumatology, Royal National Hospital for Rheumatic Diseases, University of Bath, Bath, UK

20. Rheumatology Unit, University Hospital of Cagliari

Abstract

The Scleroderma Clinical Trials Consortium represents many of the clinical researchers in the world who are interested in improving the efficiency of clinical trials in systemic sclerosis. The Scleroderma Clinical Trials Consortium has established 11 working groups 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 systemic sclerosis, the gastrointestinal tract, vascular component, calcinosis, scleroderma renal crisis, interstitial lung disease, and skin measurement. Members of the Scleroderma Clinical Trials Consortium may join any one or more of these groups. Some of the working groups 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 article, will help 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 Scleroderma Clinical Trials Consortium is dedicated to improving the lives of patients with systemic sclerosis and it is our hope that the contributions of the working groups will be one important step in this process.

Publisher

SAGE Publications

Subject

Immunology,Rheumatology,Immunology and Allergy

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