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Understanding how scleroderma affects people over time
Understanding Scleroderma PLS-715x405
Scientific Study Title:
Course and predictors of patient-reported outcomes from systemic sclerosis onset: A Scleroderma Patient-centered Intervention Network Cohort longitudinal study and individual participant data meta-analysis
Start Date:
  • 2025
End Date:
  • 2030
Research Category
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Why do this research?

People living with scleroderma experience challenges such as pain, disability, and mental health concerns, but we still don’t know much about how these problems change over time or why some people do better than others. For this research project, our goal is to improve our understanding of how scleroderma affects people’s daily lives and identify factors that may predict changes in their health. Our hope is that this knowledge can help doctors recognize when someone may need extra support or more personalized care, and that this will ultimately improve care for people living with scleroderma.

What will be done?

The research team will look at health information collected over time from more than 3,000 people with scleroderma who are part of an international cohort called Scleroderma Patient-centered Intervention Network (SPIN), along with data from several other research groups. They will examine changes in outcomes that matter most to patients, such as disability, pain, mental health, hand function, symptom burden, and concerns about appearance. By combining information from many studies, researchers will identify common patterns and factors linked to better or worse outcomes. The results will help patients and healthcare providers better understand the disease and support more personalized care.

How are equity, diversity and inclusion addressed?

The SPIN Cohort includes patient reported outcome (PRO) data from a convenience sample of diverse participants with scleroderma from 54 sites in 7 countries: Australia, Canada, France, Mexico, Spain, the United Kingdom, and the United States.

The Research Team

Principal Investigators:

Brett Thombs, PhD (McGill University)

Susan Bartlett, PhD, Research Scientist, Arthritis Research Canada (McGill University)

Andrea Benedetti, PhD (McGill University)

Geneviève Guillot, (Université Laval)

Linda Kwakkenbos, PhD (Scleroderma BC)

 

Co-Investigators:

Claire Adams, PhD (McGill University)

Vanessa Cook, (McGill University)

Monica D’Onofrio, (McGill University)

Karen Gottesman, (McGill University)

Sabrina Hoa, MD, MSc, FRCPC, Research Scientist, Arthritis Research Canada (Université de Montréal)

Marie Hudson, MD, MPH, FRCPC, Research Scientist, Arthritis Research Canada (McGill University)

Amanda Lawrie-Jones, (Patient Partner)

Vanessa Malcarne, PhD (San Diego State University; SPIN)

Luc Mouthon, MD (Universite of Paris)

Elsa-Lynn Nassar, PhD student (McGill University)

Christel Renoux, MD, PhD (McGill University)

Danielle Rice, PhD (McMaster University)

Michelle Richard, (Scleroderma Atlantic Chapter)

Maureen Sauve, (Scleroderma Society of Canada)

Amanda Wurz, PhD (University of the Fraser Valley; SPIN)

Who Funded This Research?

Canadian Institutes of Health Research

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