Spring 2019 (Volume 29, Number 1)
The Canadian Scleroderma
Research Group (CSRG)
By Murray Baron, MD, FRCPC
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The Canadian Scleroderma Research Group (CSRG)
was founded in 2004 and has now recruited over
1,600 patients and published about 150 articles.
These papers have included studies of antibodies, which
have depended on performing analyses on sera that have
been stored at Dr. Marvin Fritzler’s lab in Calgary. We have
also used our biospecimens to collaborate on work done in
other laboratories in Canada and the United States, including
participating in a large genome-wide association study
(GWAS).
In recent years we have expanded to collaborate with
other countries on our papers. We have published several
articles with the Australian group, including assessing mortality
in an inception cohort with short disease duration.
This has been under-studied because of the rare nature of
the disease. In fact, this led to the creation of the International
Systemic Sclerosis Inception Cohort (INSYNC),
which we created with collaborators in Australia, the U.S.,
Holland, Sweden, Germany and Spain. This will allow us
to study early disease and will fill an important gap as the
mean disease duration of the larger cohorts in the world is
about 10-12 years.
Our data were important to the development of the
2013 Classification Criteria for Systemic Sclerosis and was
needed to generate these new criteria. Our data were also
recently used to develop the American College of Rheumatology
Provisional Composite Response Index for Clinical
Trials in Early Diffuse Cutaneous Systemic Sclerosis
(CRISS), which may become an important primary outcome
measure for new trials in scleroderma.
Recently, because we expect a rise in demand for autologous
hematopoietic stem-cell transplants for scleroderma,
we have convened a large group of interested rheumatologists,
hematologists, patients and other researchers to plan
how to proceed in Canada with these transplants. We had
a meeting with more than 40 interested participants in the
spring of 2018, and another is planned for this spring. We
will develop details of the transplant regimens to be used
and a new set of inclusion/exclusion criteria. We have
brought the Australian Scleroderma Interest Group on
board for this project, and the development of these new
criteria is well underway. In fact, we will use the CSRG/
INSYNC database to record patient data before and after
the transplants in Canada, Australia and several of the
INSYNC countries, and will thus be able to collect prospective
data on the results of the transplants.
Murray Baron, MD, FRCPC
Chief, Division of Rheumatology,
Jewish General Hospital
Professor of Medicine, McGill University
Montreal, Quebec
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