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SPIN's Mission

There is currently no cure for scleroderma. Thus, maintaining and improving the quality of life of people living with the disease is an important health care priority. Many people with scleroderma face challenges in daily life due to their illness, including pain, fatigue, limitations in hand function, and emotional distress. However, there are currently no evidence-based programs available to help people with scleroderma cope with these challenges.


To address this gap, SPIN was founded by McGill University researcher Dr. Brett Thombs as a partnership of researchers, scleroderma clinicians, patient organizations, and patients, who work together to develop and test online programs to help people cope with important problems related to scleroderma. SPIN was launched in 2011 with seed funding from the Scleroderma Society of Ontario and Scleroderma Canada. Since then, SPIN has benefitted from the funding of many different organizations, including Sclérodermie Québec, the Scleroderma Society of Nova Scotia, the Scleroderma Association of BC, Scleroderma Manitoba, the Scleroderma Association of Saskatchewan, the World Scleroderma Foundation, Association des Sclérodermiques de France, McGill University, the Jewish General Hospital Foundation, the Arthritis Society, the Canadian Institutes of Health Research (CIHR), and the Canadian Initiative for Outcomes in Rheumatology Care (CIORA).

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.

SPIN's Strategy

There are major obstacles to developing, evaluating, and delivering support programs in rare diseases like scleroderma. Few centers around the world treat enough patients with scleroderma to run clinical trials or provide psychosocial and rehabilitation programs designed specifically for scleroderma. Furthermore, many patients live far from major treatment centers. 


To address these obstacles, SPIN’s strategy includes:


(1) A unique, international research infrastructure: SPIN maintains a large cohort of over 1,800 scleroderma patients, recruited by scleroderma clinicians from around the world. These patients complete regular online questionnaires to help researchers understand their challenges and support needs. 


2) Innovative clinical trial methods: SPIN employs an innovative research model that uses the SPIN Cohort as a framework to conduct trials of its online patient programs. Once patients are enrolled in the SPIN Cohort via SPIN healthcare sites, trials are conducted with patients from around the world via the SPIN Cohort, without costly requirements like re-obtaining ethics approval or re-negotiating trial-specific contracts for each site.


(3) Partnering to develop online patient support tools: SPIN programs are jointly designed by health experts, clinicians, and people with scleroderma to address problems that scleroderma patients have prioritized. All of SPIN’s online programs are delivered via Internet, to reach as many patients as possible.


(4) Strong patient partnerships: Patients are at the core of all SPIN activities, to ensure that our research maximally reflects the needs of people with scleroderma. SPIN works closely with 18 scleroderma patient organizations around the world. Further, patients are active members of SPIN’s Patient Advisory Board, Steering Committee, and project-specific Advisory Teams.

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