Journal article

What have multicentre registries across the world taught us about the disease features of systemic sclerosis?

Susanna M Proudman, Molla Huq, Wendy Stevens, Michelle E Wilson, Joanne Sahhar, Murray Baron, Marie Hudson, Janet Pope, Yannick Allanore, Oliver Distler, Otylia Kowal-Bielecka, Marco Matucci-Cerinic, Andrea HL Low, Gim Gee Teng, Weng Giap Law, Amelia Santosa, Mandana Nikpour



Introduction: The aim of this study is to compare the clinical features, mortality and causes of death of systemic sclerosis (SSc) patients in four large multicentre registries. Methods: Patients seen at least once in the Australian Scleroderma Cohort Study (ASCS) (n = 1714), the Canadian Scleroderma Research Group (CSRG) (n = 1628), the European League Against Rheumatism Scleroderma Trials and Research (EUSTAR) Network (n = 13,996) and the Systemic Sclerosis Cohort in Singapore (SCORE) (n = 500) before August 2016 were included. Clinical manifestations and survival in cohorts and disease subtypes were compared. Results: Among 17,838 SSc patients, most were female (86.1%), Caucasian (84.6%) ..

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Awarded by National Health and Medical Research Council of Australia

Awarded by Canadian Institutes of Health Research (CIHR)

Awarded by NMRC

Awarded by clinician scientist individual research grant

Funding Acknowledgements

This work was supported by Scleroderma Australia, Arthritis Australia, Actelion Australia, Bayer, CSL Biotherapies, GlaxoSmithKline Australia and Pfizer. Dr. Nikpour holds a National Health and Medical Research Council of Australia Career Development Fellowship (APP1126370). The Canadian Scleroderma Research Group (CSRG) is funded by the Canadian Institutes of Health Research (CIHR) (grant #FRN 83518), the Scleroderma Society of Canada and its provincial Chapters, Scleroderma Society of Ontario, Scleroderma Society of Saskatchewan, Sclerodermie Quebec, Cure Scleroderma Foundation, INOVA Diagnostics Inc. (San Diego, CA), Dr. Fooke Laboratorien GmbH (Neuss, Germany), Euroimmun (Lubeck, Germany), Mikrogen GmbH (Neuried, Germany), Fonds de la recherche en sante du Quebec (FRSQ), the Canadian Arthritis Network (CAN), and the Lady Davis Institute of Medical Research of the Jewish General Hospital, Montreal, QC. The CSRG has also received educational grants from Pfizer and Actelion pharmaceuticals. EUSTAR: Oliver Distler has/had consultancy relationship and/or has received research funding from 4 D Science, Actelion, Active Biotec, Bayer, Biogen Idec, Boehringer Ingelheim Pharma, BMS, ChemomAb, EpiPharm, Ergonex, espeRare foundation, GSK, Roche-Genentech, Inventiva, Lilly, medac, MedImmune, Mitsubishi Tanabe, Pharmacyclics, Pfizer, Sanofi, Serodapharm, Sinoxa and UCB in the area of potential treatments of scleroderma and its complications. He has a patent on mir-29 for the treatment of systemic sclerosis licensed. The SCORE cohort was supported by the Singapore Clinical Research Institute multi-centre research electronic data capture, with funding support from the National Medical Research Council. Dr. Low holds a NMRC transition award (NMRC/TA/013/2012) and clinician scientist individual research grant (CIRG14nov021). The SCORE cohort has received patient support grants from Actelion pharmaceuticals.