The Scleroderma Patient-Centered Intervention Network Self-Management Program: Protocol for a Randomized Feasibility Trial

Marie-Eve Carrier   ¹ ;   Linda Kwakkenbos   ² ;   Warren R Nielson   ³ ;   Claire Fedoruk   ¹ ;   Karen Nielsen   ⁴ ;   Katherine Milette   ¹ ;   Janet Pope   ⁵ ;   Tracy Frech   ⁶ ;   Shadi Gholizadeh   ⁷ ;   Laura Hummers   ⁸ ;   Sindhu R Johnson   ^{9, 10} ;   Pamela Piotrowski   ¹¹ ;   Lisa Jewett   ¹ ;   Jessica Gordon   ¹² ;   Lorinda Chung   ¹³ ;   Dan Bilsker   ^{14, 15} ;   Kimberly A Turner   ¹ ;   Julie Cumin   ¹ ;   Joep Welling   ¹⁶ ;   Catherine Fortune   ⁴ ;   Catarina Leite   ¹⁷ ;   Karen Gottesman   ¹⁸ ;   Maureen Sauve   ^{4, 19} ;   Tatiana S Rodríguez-Reyna   ²⁰ ;   Marie Hudson   ^{1, 21} ;   Maggie Larche   ²² ;   Ward van Breda   ²³ ;   Maria E Suarez-Almazor   ²⁴ ;   Susan J Bartlett   ²¹ ;   Vanessa L. Malcarne   ²⁵ ;   Maureen D. Mayes   ²⁶ ;   Isabelle Boutron   ^{27, 28} ;   Luc Mouthon   ^{27, 28} ;   Fredrick Wigley   ⁸ ;   Brett D Thombs   ^{1, 21, 29, 30, 31, 32} ;   SPIN Investigators   ³³

¹ Lady Davis Institute of the Jewish General Hospital, Montreal, QC, Canada

² Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, Netherlands

³ St. Joseph’s Health Care, London, ON, Canada

⁴ Scleroderma Society of Ontario, Hamilton, ON, Canada

⁵ University of Western Ontario, London, ON, Canada

⁶ University of Utah, Salt Lake City, UT, United States

⁷ California School of Professional Psychology/Alliant, Los Angeles, CA, United States

⁸ Johns Hopkins University School of Medicine, Baltimore, MD, United States

⁹ Toronto Scleroderma Program, Mount Sinai Hospital & Toronto Western Hospital, Toronto, ON, Canada

¹⁰ Division of Occupational Medicine, St. Michael’s Hospital, Toronto, ON, Canada

¹¹ Private practice – Nutrition, Hamilton, ON, Canada

¹² Hospital for Special Surgery, New York, NY, United States

¹³ Departments of Pediatrics, Biomedical Data Science, Psychiatry and Behavioral Sciences, Stanford University, Stanford, CA, United States

¹⁴ Simon Fraser University, Burnaby, BC, Canada

¹⁵ School of Population and Public Health, Faculty of Medicine, University of British Columbia, Vancouver, BC, Canada

¹⁶ NVLE Dutch patient organization for systemic autoimmune diseases, Utrecht, Netherlands

¹⁷ University of Minho, Braga, Portugal

¹⁸ Scleroderma Foundation, Los Angeles, CA, United States

¹⁹ Scleroderma Canada, Hamilton, ON, Canada

²⁰ Instituto Nacional de Ciencias Médicas y Nutrición Salvador Zubirán, Mexico City, Mexico

²¹ Department of Medicine, McGill University, Montreal, QC, Canada

²² Department of Health Research Methods, Evidence and Impact, McMaster University, Hamilton, ON, Canada

²³ Faculty of Behavioural and Movement Sciences, Vrije University, Amsterdam, Netherlands

²⁴ University of Texas MD Anderson Cancer Center, Houston, TX, United States

²⁵ San Diego State University, San Diego, CA, United States

²⁶ University of Texas McGovern School of Medicine, Houston, TX, United States

²⁷ Université Paris Descartes, Paris, France

²⁸ Assistance Publique - Hôpitaux de Paris, Paris, France

²⁹ Department of Psychiatry, McGill University, Montreal, QC, Canada

³⁰ Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montreal, QC, Canada

³¹ Department of Psychology, McGill University, Montreal, QC, Canada

³² Department of Educational and Counselling Psychology, McGill University, Montreal, QC, Canada

³³ See list of Collaborators