In November 2012, the CSRG joined forces with other scleroderma cohorts around the world to create the International Systemic Sclerosis Inception Cohort or INSYNC. During a 2-day meeting that took place at the Jewish General Hospital in Montréal, selected members of the CSRG (Drs. Baron, Hudson & Pope) sat down with other Directors of scleroderma databases from the United States (Dr. Frech), Spain (Dr. Carreira), Germany (Dr. Hunzelmann) and Australia (Drs. Proudman, Stevens, & Nikpour) to discuss how to increase even more their capacity to perform research. Ms. Maureen Sauvé, President of the Scleroderma Society of Ontario and President of the Scleroderma Society of Canada, also attended this first INSYNC meeting.
Significance and Outcome of the Meeting
We contemplate that this collaborative work will result in the formation of the world’s first large inception cohort of subjects with systemic sclerosis (SSc). Although all of our own research groups have published extensively about many aspects of SSc, those studies have been based on prevalent cohorts with subjects of many different disease durations.
Many studies on topics such as mortality in SSc have been hampered by relatively small sizes or have been dependent on administrative data.
This large multi-national, multi-ethnic cohort will be able to provide much more accurate data than previous studies. Accurately determining the predictors of mortality will also allow us to direct future therapeutic trials at those with highest risk.
In addition, studies that will come from the data and biologic specimens from this inception cohort will be unique. It has been very difficult for any one research group to acquire large numbers of bio-samples from recent onset disease. This new cohort will be able to provide those samples and will permit many studies of biomarkers and of pathophysiologic mechanisms of the disease near its onset, which have not been possible before.
This cohort will also allow us to study the natural history of the disease in greater detail than has ever been performed. It will allow us to determine clinical and laboratory markers of significant disease progression so that treatment studies can be initiated in those at most risk.
The creation of INSYNC will definitely strengthen CSRG's relationship with scleroderma research groups around the world who, like us, aim to better understand scleroderma and its symptoms in order to better treat people suffering from it.
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