The Scleroderma Patient-centered Intervention Network (SPIN)
The Scleroderma Patient-centered Intervention Network (SPIN) is an organization of researchers, health care providers, and people living with scleroderma from around the world.
SPIN’s mission is to work with people with scleroderma to identify their needs and prioritize research in areas most important to them, and to develop, test and disseminate accessible patient programs that improve quality of life and empower people with scleroderma and their loved ones.
Areas targeted by SPIN’s programs include managing symptoms, daily tasks, emotions and changing relationships related to illness, as well as balancing activity and rest.
SPIN is led by Dr. Brett Thombs from the Jewish General Hospital and McGill University in Montreal, Canada. The network is working closely with scleroderma experts at over 45 clinical sites around the world and scleroderma patient organizations, including Scleroderma Canada, Sclérodermie Québec, the Scleroderma Association of British Columbia, Scleroderma Alberta, the Scleroderma Association of Saskatchewan, Scleroderma Manitoba, the Scleroderma Society of Ontario, the Scleroderma Society of Nova Scotia, the US Scleroderma Foundation, the Federation of European Scleroderma Associations (FESCA), the Dutch patient organization for systemic autoimmune diseases (NVLE), Scleroderma Australia, Scleroderma New Zealand, Scleroderma & Raynaud’s UK (SRUK), Project Scleroderma, the Spanish Scleroderma Association, and the French Scleroderma Association (ASF).