Scleroderma Association of BC Research Project March 2017 Update
SABC is the User Partner Organization for the genome research study that began recruitment of scleroderma patients with and without interstitial lung disease (ILD) in July 2016. SABC has been behind this project for the last four years, contributing $160,000 in donations to date.
Your donations do make a difference in contributing to research that otherwise would not even be considered. This proof-of-concept study investigates specific gene markers, on three cell types, skin, circulating immune and mononuclear, to identify which genes are active and non-active in scleroderma patients. This study is important for the 0.03% of the general population with scleroderma to help predict which patients will respond to therapy and to understand the reasons why others either do not respond or, worse, develop adverse drug reactions.
The research team brings together experts in respirology, rheumatology, bioinformatics and genetical statistics to uniquely tackle this challenge. The team is led by Dr. James Dunne and Kevin Keen, and includes Dr. Raewyn Broady, Robert Holt PhD, Dr. Chris Ryerson and Dr. Pearce Wilcox. SABC President Rosanne Queen and Vice President Bob Buzza also participate on the team to keep you informed on the progress of this user/patient-funded research program and to ensure the interests of patients and their families are at the forefront.
Skin and blood samples are being taken from 15 controls, 15 scleroderma patients with ILD and 15 scleroderma patients without ILD. Since the end of October 2016, samples are being stored at the Scleroderma Biobank at St. Paul’s Hospital in Vancouver. This research program will create a firm foundation for the development of an intensive genome research project directed at methods to improve treatment of scleroderma, with the expectation of receiving future support from donations and research funding agencies.
Research in Canada
In addition to research being undertaken in BC, there are several high calibre research consortiums in Canada involved in studies focused on scleroderma:
Canadian Scleroderma Research Group, under the directorship of Dr. Murray Baron.
The CSRG maintains a key database of scleroderma patient information used by scleroderma researchers of many disciplines.
To read about some of their published work, please visit:
Scleroderma Research Group of the Center de Hospitalier de l'Universite de Montreal (SRG-CHUM)
Read more about the accomplishments of Dr. Jean-Luc Senéchal and his team by visiting
Hamilton Scleroderma Group (HSG), St Joseph's Healthcare McMaster University
The work being undertaken by this group has wide ranging implications for the future of scleroderma research.
Scleroderma Patient Intervention Network (SPIN)