The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

Dane H Dougherty¹, Linda Kwakkenbos^{2

3

4}, Marie-Eve Carrier³, Gloria Salazar¹, Shervin Assassi¹, Murray Baron^{3

5}, Susan J Bartlett^{5

6

7}, Daniel E Furst^{8

9

10}, Karen Gottesman¹¹, Frank van den Hoogen^{12

13}, Vanessa L Malcarne^{14

15}, Luc Mouthon^{16

17}, Warren R Nielson^{18

19}, Serge Poiraudeau^{16

20

21}, Maureen Sauvé^{22

23}, Gilles Boire²⁴, Alessandra Bruns²⁴, Lorinda Chung²⁵, Christopher Denton²⁶, James V Dunne^{27

28}, Paul Fortin²⁹, Tracy Frech³⁰, Anna Gill²⁷, Jessica Gordon³¹, Ariane L Herrick³², Monique Hinchcliff³³, Marie Hudson^{5

34}, Sindhu R Johnson^{35

36}, Niall Jones³⁷, Suzanne Kafaja⁸, Maggie Larché³⁸, Joanne Manning³⁹, Janet Pope⁴⁰, Robert Spiera³¹, Virginia Steen⁴¹, Evelyn Sutton⁴², Carter Thorne⁴³, Pearce Wilcox^{28

29}, Brett D Thombs^{2

3

5

44

45

46

47}, Maureen D Mayes¹; SPIN Investigators

Affiliations

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.

PMID: 29868924
DOI: 10.1093/rheumatology/key139

Clinical Trial

The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

Dane H Dougherty et al. Rheumatology (Oxford). 2018.

. 2018 Sep 1;57(9):1623-1631.

doi: 10.1093/rheumatology/key139.

Authors

Affiliations

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.

PMID: 29868924
DOI: 10.1093/rheumatology/key139

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.

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The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

Affiliations

The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts

Authors

Affiliations

Abstract

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical