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).

Infographic from SPIN

From Research to Real Life: How SPIN Supports the Scleroderma Community.

“The Scleroderma Patient-centered Intervention Network (SPIN) is a Canadian-led research network. SPIN’s mission is to learn about challenges faced by real people with scleroderma and to build, test, and share resources to address these challenges.

SPIN researchers and patient partners work together closely to make sure SPIN studies address real patient needs.

This includes partners from Scleroderma Manitoba. As a result, SPIN is a world leader in research that matters to people with scleroderma.

SPIN and Scleroderma Manitoba have partnered on two recent initiatives, What’s New in Scleroderma Research and The Patient’s Pick.”

View or download this informational resource here.

SPIN Progress Report – January 2023

Researcher profiles

Dr. Brett Thombs - Director of SPIN

brett.thombs@mcgill.ca Tel.: 514-340-8222 ext. 5112 Dr. Thombs and his team focus on developing strategies to improve quality of life and reduce disability among people living with scleroderma. He is the Founder and Director of the Scleroderma Patient-centered Intervention Network (SPIN), a patient-researcher collaboration that maintains an ongoing cohort of > 2,000 patients from over 40 sites in 7 countries and conducts trials of patient-centered tools to support coping with scleroderma. Among his over 250 peer-reviewed publications, Dr. Thombs has authored > 80 on patient experiences and outcomes in scleroderma. He has been PI on over $3.5 million in funding for patient-oriented research in scleroderma.
Publications Thombs BD, Jewett LR, Kwakkenbos L, Hudson M, Baron M, Canadian Scleroderma Research Group. Stability of major depression diagnoses among patients with systemic sclerosis: Baseline and 1-month follow-up. Arthritis Care Res. 2015;67(3):411-416.   Razykov I, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. Prevalence and clinical correlates of pruritus in patients with systemic sclerosis: An updated analysis of 959 patients. Rheumatology. 2013;52(11):2056-2061.    Milette K Hudson M, Körner A, Baron M, Thombs BD. Sleep disturbances in systemic sclerosis: Evidence for the role of pain, pruritus, and gastrointestinal symptoms. Rheumatology. 2013;52(9):1715-1720.   Kwakkenbos L, Jewett LR, Baron M, Bartlett SJ, Furst D, Gottesman K, Khanna D, Malcarne VL, Mayes MD, Mouthon L, Poiraudeau S, Sauve M, Nielson WR, Poole JL, Assassi S, Boutron I, Ells C, van den Ende CHM, Hudson M, Impens A, Körner A, Leite C,Costa Maia A, Mendelson C, Pope J, Steele RJ, Suarez-Almazor ME, Ahmed S, Coronado-Montoya S, Delisle VC, Gholizadeh S, Jang Y, Levis B, Milette K, Mills SD, Razykov I, Sobel RM, Thombs BD. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomized controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation intervention trials in a rare disease context. BMJ Open. 2013;3:e003563.   Jewett LR, Razykov I, Hudson M, Baron M, Thombs BD. Lifetime, 12-month, and 30-day prevalence of major depressive disorder among patients with systemic sclerosis. Rheumatology. 2013;52(4):669-675.   Levis B, Burri A, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. Comparison of rates of sexual activity and dysfunction between women with systemic sclerosis and women from a population sample. PLOS ONE. 2012;7(12):e52129.

Dr. Linda Kwakkenbos - Co-Director of SPIN

Dr. Linda Kwakkenbos is the Co-Director of the Scleroderma Patient-centered Intervention Network (SPIN). After completion of her PhD in Social Science at Radboud University, the Netherlands, in the summer of 2012, Dr. Kwakkenbos started working with Dr. Brett Thombs at McGill University. She initially coordinated the SPIN project, and was later named Co-Director. Linda manages the project on a day-to-day basis with Dr. Brett Thombs and Marie-Eve Carrier. Dr. Kwakkenbos is currently a Lecturer and Researcher at the Behavioural Science Institute of Radboud University. She teaches in a number of courses in the Psychology Bachelor and Master programs, including research, communication and diagnostic skills trainings. Dr. Kwakkenbos’ research focuses on the development and testing of patient-reported outcome measures, novel research methodologies, and the development of interventions that help contribute to better disease management in chronic diseases, focusing on rare diseases. To support her work in SPIN, Linda received a Post-doctoral Fellowship from the Fonds de la Recherche en Santé Québec (FRSQ; 2013-2015) and was awarded the prestigious Banting Postdoctoral Fellowship from the Canadian Institutes of Health Research (CIHR; 2015-2017).

The SPIN team consists of professionals with a wide variety of backgrounds, patient advocates, trainees, and support staff.

Visit the SPIN web site for more information about these individuals.

To stay up to date on SPIN’s research activities, you can follow us on Facebook (www.facebook.com/spinsclero), Twitter (www.twitter.com/spinsclero), or our website (www.spinsclero.com).