Development and validation of the Scleroderma Clinical Trials Consortium Damage Index (SCTC-DI): a novel instrument to quantify organ damage in systemic sclerosis
Nava Ferdowsi, Molla Huq, Wendy Stevens, Marie Hudson, Mianbo Wang, Tien Tay, Jodie L Burchell, Sam Mancuso, Candice Rabusa, Vijaya Sundararajan, David Prior, Susanna M Proudman, Murray Baron, Mandana Nikpour, Tracy Frech, Marie Hudson, Susanna Proudman, Wendy Stevens, Tien Tay, Souyma Chatterjee Show all
ANNALS OF THE RHEUMATIC DISEASES | BMJ PUBLISHING GROUP | Published : 2019
OBJECTIVE: We sought to develop the first Damage Index (DI) in systemic sclerosis (SSc). METHODS: The conceptual definition of 'damage' in SSc was determined through consensus by a working group of the Scleroderma Clinical Trials Consortium (SCTC). Systematic literature review and consultation with patient partners and non-rheumatologist experts produced a list of potential items for inclusion in the DI. These steps were used to reduce the items: (1) Expert members of the SCTC (n=331) were invited to rate the appropriateness of each item for inclusion, using a web-based survey. Items with >60% consensus were retained; (2) Using a prospectively acquired Australian cohort data set of 1568 pati..View full abstract
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Awarded by NHMRC Fellowship
Awarded by Canadian Institutes of Health Research (CIHR)
The development of the SCTC-DI was supported by SCTC Working Group grants. The Australian Scleroderma Cohort Study is supported by Scleroderma Australia, Arthritis Australia, Actelion Australia, Bayer, CSL Biotherapies, GlaxoSmithKline Australia and Pfizer. A/Prof Nikpour holds an NHMRC 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 (San Diego, CA), Fooke Laboratorien (Neuss, Germany), Euroimmun (Lubeck, Germany), Mikrogen (Neuried, Germany), Fonds de la rechercheen 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.