Dane H Dougherty1, Linda Kwakkenbos2,3,4, Marie-Eve Carrier3, Gloria Salazar1, Shervin Assassi1, Murray Baron3,5, Susan J Bartlett5,6,7, Daniel E Furst8,9,10, Karen Gottesman11, Frank van den Hoogen12,13, Vanessa L Malcarne14,15, Luc Mouthon16,17, Warren R Nielson18,19, Serge Poiraudeau16,20,21, Maureen Sauvé22,23, Gilles Boire24, Alessandra Bruns24, Lorinda Chung25, Christopher Denton26, James V Dunne27,28, Paul Fortin29, Tracy Frech30, Anna Gill27, Jessica Gordon31, Ariane L Herrick32, Monique Hinchcliff33, Marie Hudson5,34, Sindhu R Johnson35,36, Niall Jones37, Suzanne Kafaja8, Maggie Larché38, Joanne Manning39, Janet Pope40, Robert Spiera31, Virginia Steen41, Evelyn Sutton42, Carter Thorne43, Pearce Wilcox28,29, Brett D Thombs2,3,5,44,45,46,47, Maureen D Mayes1. 1. Department of Internal Medicine, Division of Rheumatology, University of Texas McGovern Medical School, Houston, TX, USA. 2. Department of Psychiatry, McGill University, Montreal, QC, Canada. 3. Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada. 4. Behavioural Science Institute, Clinical Psychology, Radboud University, Nijmegen, the Netherlands. 5. Department of Medicine, McGill University, Montreal, QC, Canada. 6. Division of Rheumatology, Johns Hopkins School of Medicine, Baltimore, MD, USA. 7. McGill University Health Center, Montréal, QC, Canada. 8. Division of Rheumatology, Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA. 9. Medicine, University of Washington, Seattle, WA, USA. 10. Medicine, University of Florence, Florence, Italy. 11. Scleroderma Foundation, Danvers, MA, USA. 12. Department of Rheumatology, Radboud University Medical Center, Nijmegen, The Netherlands. 13. Department of Rheumatology, Sint Maartenskliniek, Nijmegen, The Netherlands. 14. Department of Psychology, San Diego State University, San Diego, CA, USA. 15. San Diego Joint Doctoral Program in Clinical Psychology, San Diego State University/University of California, San Diego, CA, USA. 16. Médecine interne, Université Paris Descartes, Assistance Publique-Hôpitaux de Paris, France. 17. Service de Médecine Interne, Centre de Référence Maladies Systémiques Autoimmunes Rares, vascularites nécrosantes et sclérodermie systémique, Hôpital Cochin, Paris, France. 18. Beryl & Richard Ivey Rheumatology Day Programs, St Joseph's Health Care, London, ON, Canada. 19. Lawson Health Research Institute, London, ON, Canada. 20. Service de Médecine Physique et Réadaptation, Hôpital Cochin, France. 21. IFR Handicap INSERM, Paris, France. 22. Scleroderma Society of Ontario, Hamilton. 23. Scleroderma Society of Canada, Ottawa, ON, Canada. 24. Département de médecine, Sherbrooke University, Sherbrooke, QC, Canada. 25. Medicine - Med/Immunology & Rheumatology, Stanford University, Stanford, CA, USA. 26. Department of Rheumatology, Royal Free London Hospital, London, UK. 27. Rheumatology, St Paul's Hospital, University of British Columbia, Vancouver, BC, Canada. 28. Department of Medicine, University of British Columbia, Vancouver, BC, Canada. 29. Département de médecine, Université Laval, Québec, QC, Canada. 30. Internal Medicine, University of Utah, Salt Lake City, UT, USA. 31. Department of Rheumatology, Hospital for Special Surgery, New York City, NY, USA. 32. Division of Musculoskeletal & Dermatological Sciences, University of Manchester, Salford Royal NHS Foundation Trust, Manchester, UK. 33. Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. 34. Center for Clinical Epidemiology and Community Studies, Jewish General Hospital, Montréal, QC, Canada. 35. Toronto Scleroderma Program, Mount Sinai Hospital, Toronto Western Hospital, University of Toronto, Toronto, ON, Canada. 36. University of Toronto, Toronto, ON, Canada. 37. Division of Rheumatology, University of Alberta, Edmonton, AB, Canada. 38. Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada. 39. Clinical and Research Vascular Laboratories, Salford Royal NHS Foundation Trust, Salford, UK. 40. Bone & Joint Institute, University of Western Ontario, London, ON, Canada. 41. Department of Medicine, Georgetown University, Washington, DC, USA. 42. Division of Rheumatology, Dalhousie University, Halifax, NS. 43. Southlake Regional Health Centre, Newmarket, ON. 44. Department of Epidemiology, Biostatistics, and Occupational Health, McGill University, Montréal, QC, Canada. 45. Department of Educational and Counselling Psychology, McGill University, Montréal, QC, Canada. 46. Department of Psychology, McGill University, Montréal, QC, Canada. 47. School of Nursing, McGill University, Montréal, QC, Canada.
Abstract
Objectives: The Scleroderma Patient-centered Intervention Network (SPIN) Cohort is a web-based cohort designed to collect patient-reported outcomes at regular intervals as a framework for conducting trials of psychosocial, educational, self-management and rehabilitation interventions for patients with SSc. The aim of this study was to present baseline demographic, medical and patient-reported outcome data of the SPIN Cohort and to compare it with other large SSc cohorts. Methods: Descriptive statistics were used to summarize SPIN Cohort characteristics; these were compared with published data of the European Scleroderma Trials and Research (EUSTAR) and Canadian Scleroderma Research Group (CSRG) cohorts. Results: Demographic, organ involvement and antibody profile data for SPIN (N = 1125) were generally comparable with that of the EUSTAR (N = 7319) and CSRG (N = 1390) cohorts. There was a high proportion of women and White patients in all cohorts, though relative proportions differed. Scl70 antibody frequency was highest in EUSTAR, somewhat lower in SPIN, and lowest in CSRG, consistent with the higher proportion of interstitial lung disease among dcSSc patients in SPIN compared with in CSRG (48.5 vs 40.3%). RNA polymerase III antibody frequency was highest in SPIN and remarkably lower in EUSTAR (21.1 vs 2.4%), in line with the higher prevalence of SSc renal crisis (4.5 vs 2.1%) in SPIN. Conclusion: Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.
Objectives: The SclerodermaPatient-centered Intervention Network (SPIN) Cohort is a web-based cohort designed to collect patient-reported outcomes at regular intervals as a framework for conducting trials of psychosocial, educational, self-management and rehabilitation interventions for patients with SSc. The aim of this study was to present baseline demographic, medical and patient-reported outcome data of the SPIN Cohort and to compare it with other large SSc cohorts. Methods: Descriptive statistics were used to summarize SPIN Cohort characteristics; these were compared with published data of the European Scleroderma Trials and Research (EUSTAR) and Canadian Scleroderma Research Group (CSRG) cohorts. Results: Demographic, organ involvement and antibody profile data for SPIN (N = 1125) were generally comparable with that of the EUSTAR (N = 7319) and CSRG (N = 1390) cohorts. There was a high proportion of women and White patients in all cohorts, though relative proportions differed. Scl70 antibody frequency was highest in EUSTAR, somewhat lower in SPIN, and lowest in CSRG, consistent with the higher proportion of interstitial lung disease among dcSSc patients in SPIN compared with in CSRG (48.5 vs 40.3%). RNA polymerase III antibody frequency was highest in SPIN and remarkably lower in EUSTAR (21.1 vs 2.4%), in line with the higher prevalence of SSc renal crisis (4.5 vs 2.1%) in SPIN. Conclusion: Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.
Authors: Lydia Tao; Claire Fedoruk; Kimberly A Turner; Julie Cumin; Marie-Eve Carrier; Andrea Carboni-Jiménez; Mia R Pépin; Linda Kwakkenbos; Brett D Thombs Journal: J Scleroderma Relat Disord Date: 2019-04-23
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Authors: Brett D Thombs; Linda Kwakkenbos; Brooke Levis; Angelica Bourgeault; Richard S Henry; Alexander W Levis; Sami Harb; Lydia Tao; Marie-Eve Carrier; Laura Bustamante; Delaney Duchek; Laura Dyas; Ghassan El-Baalbaki; Kelsey Ellis; Danielle B Rice; Amanda Wurz; Julia Nordlund; Maria Gagarine; Kimberly A Turner; Nora Østbø; Nicole Culos-Reed; Shannon Hebblethwaite; Scott Patten; Susan J Bartlett; John Varga; Luc Mouthon; Sarah Markham; Michael S Martin; Andrea Benedetti Journal: Lancet Rheumatol Date: 2021-04-16
Authors: Jessica K Gordon; Kimberly Showalter; Yin Wu; Linda Kwakkenbos; Marie-Eve Carrier; Richard S Henry; Nora Østbø; Julia Nordlund; Angelica Bourgeault; Mara Cañedo-Ayala; Andrea Carboni-Jiménez; Christopher P Denton; Luc Mouthon; Brett D Thombs; Robert F Spiera Journal: Lancet Rheumatol Date: 2022-01-18
Authors: Dinesh Khanna; Alain Lescoat; David Roofeh; Elana J Bernstein; Ella A Kazerooni; Michael D Roth; Fernando Martinez; Kevin R Flaherty; Christopher P Denton Journal: Arthritis Rheumatol Date: 2021-11-10 Impact factor: 15.483
Authors: Robyn K Wojeck; Susan G Silva; Donald E Bailey; Mitchell R Knisely; Linda Kwakkenbos; Marie-Eve Carrier; Warren R Nielson; Susan J Bartlett; Janet Pope; Brett D Thombs Journal: Nurs Res Date: 2021 Set/Oct 01 Impact factor: 2.381