Researchers from The Institute have shed new light on patterns, risks, and geographic hotspots of this rare autoimmune skin condition
SOURCE: The Institute
June 27, 2025
In recognition of World Scleroderma Day this June, researchers at the Research Institute of the McGill University Health Centre (The Institute) are shining a spotlight on a rare, chronic autoimmune disease that has long been overlooked. A new population-based study led by Elena Netchiporouk, MD, M.Sc., scientist at The Institute and dermatologist at the McGill University Health Centre (MUHC), provides the first-ever detailed look at how many people in Quebec are affected by localized scleroderma, also known as morphea—a condition that causes thickening and hardening of the skin, leading to pain, disability, and cosmetic issues.
Published in The Lancet Regional Health — Americas, the study analyzed 30 years of healthcare data, revealing that over 6,000 Quebecers were diagnosed with localized scleroderma between 1996 and 2019. The research showed the disease affects women three times more often than men, particularly between ages 60 and 79. Cases rose until about 2004, plateaued, and began declining after 2013. The team also identified geographic hotspots in southern Quebec, suggesting potential environmental or genetic factors.
"Localized scleroderma has been neglected in research, especially in Canada. Our study offers the first clear picture of how many people are affected, how trends have shifted, and where the disease is most common," says Dr. Netchiporouk. "This is critical to raise awareness, improve care, and guide future research."
Currently, treatments for localized scleroderma focus on reducing skin inflammation and preventing complications using immunosuppressive drugs, phototherapy, and physical therapy, but early diagnosis remains key to better outcomes.
Physicians and healthcare providers can use these findings to improve patient care by recognizing at-risk groups, enhancing early detection efforts, and tailoring care to areas where the disease is more prevalent. The study also raises important questions for policymakers about how to allocate healthcare resources and plan services for patients living with rare autoimmune diseases.
A surprising finding was higher early mortality in women aged 40 to 59, a trend the team plans to investigate further. Next steps also include exploring environmental and genetic risk factors in southern Quebec and understanding how aging and immune changes influence the disease.
This research was funded by the Canadian Dermatology Foundation, National Scleroderma Foundation, and CIHR, with additional support from the Fonds de recherche du Québec — Santé (FRQS).
About the study
Incidence, prevalence, and mortality of localized scleroderma in Quebec, Canada: a population-based study was published by Stephanie Ghazal, Anastasiya Muntyanu, Katherine Aw, Mohammed Kaouache, Lauren Khoury, Maryam Piram, Catherine McCuaig, Gaëlle Chédeville, Elham Rahme, Mohammed Osman, Jordana Schachter, Janie Bertrand, and Elena Netchiporouk in The Lancet Regional Health — Americas, Volume 44, 101044
DOI: 10.1016/j.lana.2025.101044
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