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Spring 2019 (Volume 29, Number 1)

The Scleroderma Patient-centred Intervention Network (SPIN): An Innovative Cohort-Based Initiative for Scleroderma

By Claire Fedoruk; Marie-Eve Carrier; Linda Kwakkenbos; and Brett D. Thombs

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Scleroderma is a rare autoimmune disease characterized by the hardening of connective tissues, which can substantially damage the skin, blood vessels, muscles, and internal organs. Common problems include limitations in hand function and mobility, pain, fatigue, and emotional distress from disfiguring aspects of the disease, among other challenges.

Although rare diseases collectively affect one in 12 Canadians, the small number of patients at any given location is a barrier to developing and testing disease-specific support programs. Thus, people with scleroderma and other rare diseases must often cope without the kind of support programs that are generally available to people with more common diseases.

To develop and rigorously test patient programs in a rare-disease context, SPIN maintains a cohort of more than 1,800 scleroderma patients, who complete quarterly online assessments that help the SPIN team to understand their challenges and support needs. SPIN cohort patients are recruited by rheumatologists and other scleroderma health professionals from 40 clinical centres in seven countries.

The SPIN cohort also serves as an infrastructure for conducting clinical trials of SPIN’s online support programs. Each program addresses a problem that scleroderma patients have identified as important, with programs currently in development to support:

  1. disease self-management;
  2. hand function;
  3. emotional coping and;
  4. body image distress.

SPIN’s first online program provides rehabilitation exercises to support hand function in people with scleroderma.

The first of SPIN’s online programs will be available free-of-charge to the public in 2019. SPIN also recently pilot tested a videoconference-based program to provide training and resources for scleroderma peer support group leaders.

For information about getting involved with SPIN Cohort recruitment and/or research, please consult SPIN’s website (www.spinsclero.com) or email spin@jgh.mcgill.ca.

Claire Fedoruk
SPIN Communications and Outreach Coordinator,
Lady Davis Institute
Jewish General Hospital
Montreal, Quebec

Marie-Eve Carrier
SPIN Coordinator,
Research Associate,
Lady Davis Institute
Jewish General Hospital
Montreal, Quebec

Linda Kwakkenbos
Co-director of SPIN,
Lecturer and Researcher,
Behavioural Science Institute
Radboud University Nijmegen
Nijmegen, Netherlands

Brett D. Thombs
Director of SPIN,
Professor, Faculty of Medicine,
McGill University
Senior Investigator,
Lady Davis Institute
Jewish General Hospital
Montreal, Quebec

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