Scleroderma Patient-centered Intervention Network (SPIN) Cohort

SPIN is an international collaboration of patient organizations, clinicians, and researchers with the aim to develop a clinical research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve health-related quality of life for people living with scleroderma. SPIN investigators are involved from Canada (e.g., Marie Hudson, Murray Baron, Janet Pope), the USA (e.g., Maureen Mayes, Shervin Assassi, Dinesh Khanna, Dan Furst, Fred Wigley), and Europe (e.g., Frank van den Hoogen, Luc Mouthon). SPIN is a low-risk endeavour in terms of ethics requirements and designed to be extremely low burden on recruiting sites (one-time interaction with small amount of time involved). So far, we have been able to handle almost all of the ethics work for sites with the idea of keeping burden low. Though SPIN is funded for 5 years, we believe that it is something that we can fund on an ongoing basis, and this is our intent. We will use something called the cohort multiple RCT design, which means that patients enroll in a cohort for longitudinal data collection. Upon enrollment in the cohort, patients also consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other patients in the cohort. Once SPIN interventions are developed, patients from the cohort will be randomly selected to be offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared to outcomes from trial-eligible patients who are not offered the interventions. Once tested, effective interventions will be made accessible to patients with SSc through patient organizations partnering with SPIN. We are currently developing four scleroderma-specific interventions, including 1) a general scleroderma self-management program; 2) a program to support coping with emotional distress; 3) a program to support body image concerns; 4) and a program of exercises to address problems with hand function. These interventions will be developed in an online, self-guided format to facilitate dissemination among patients, especially for those living far from specialist treatment centers.