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The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context.
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 CH, 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, Fox RS, Thombs BD. Kwakkenbos L, et al. Among authors: gottesman k. BMJ Open. 2013 Aug 7;3(8):e003563. doi: 10.1136/bmjopen-2013-003563. BMJ Open. 2013. PMID: 23929922 Free PMC article.
New directions for patient-centred care in scleroderma: the Scleroderma Patient-centred Intervention Network (SPIN).
Thombs BD, Jewett LR, Assassi S, Baron M, Bartlett SJ, Maia AC, El-Baalbaki G, Furst DE, Gottesman K, Haythornthwaite JA, Hudson M, Impens A, Korner A, Leite C, Mayes MD, Malcarne VL, Motivala SJ, Mouthon L, Nielson WR, Plante D, Poiraudeau S, Poole JL, Pope J, Sauve M, Steele RJ, Suarez-Almazor ME, Taillefer S, van den Ende CH, Arthurs E, Bassel M, Delisle V, Milette K, Leavens A, Razykov I, Khanna D. Thombs BD, et al. Among authors: gottesman k. Clin Exp Rheumatol. 2012 Mar-Apr;30(2 Suppl 71):S23-9. Epub 2012 May 29. Clin Exp Rheumatol. 2012. PMID: 22244687 Free PMC article.
Validation of the Self-Efficacy for Managing Chronic Disease Scale: A Scleroderma Patient-Centered Intervention Network Cohort Study.
Riehm KE, Kwakkenbos L, Carrier ME, Bartlett SJ, Malcarne VL, Mouthon L, Nielson WR, Poiraudeau S, Nielsen K, Baron M, Frech T, Hudson M, Pope J, Sauve M, Suarez-Almazor ME, Wigley FM, Thombs BD; Scleroderma Patient-Centered Intervention Network Investigators. Riehm KE, et al. Arthritis Care Res (Hoboken). 2016 Aug;68(8):1195-200. doi: 10.1002/acr.22807. Arthritis Care Res (Hoboken). 2016. PMID: 26619042 Free article.
Reasons for non-participation in scleroderma support groups.
Delisle VC, Gumuchian ST, Pelaez S, Malcarne VL, El-Baalbaki G, Körner A, Hudson M, Baron M, Thombs BD; the Scleroderma Support Group Project Advisory Team. Delisle VC, et al. Clin Exp Rheumatol. 2016 Sep-Oct;34 Suppl 100(5):56-62. Epub 2016 Feb 25. Clin Exp Rheumatol. 2016. PMID: 26950221
Using Optimal Test Assembly Methods for Shortening Patient-Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scale-6: A Scleroderma Patient-Centered Intervention Network Cohort Study.
Levis AW, Harel D, Kwakkenbos L, Carrier ME, Mouthon L, Poiraudeau S, Bartlett SJ, Khanna D, Malcarne VL, Sauve M, van den Ende CH, Poole JL, Schouffoer AA, Welling J, Thombs BD; the Scleroderma Patient-Centered Intervention Network Investigators. Levis AW, et al. Arthritis Care Res (Hoboken). 2016 Nov;68(11):1704-1713. doi: 10.1002/acr.22893. Epub 2016 Oct 9. Arthritis Care Res (Hoboken). 2016. PMID: 27015290 Free article.
Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study.
Jewett LR, Kwakkenbos L, Carrier ME, Malcarne VL, Bartlett SJ, Furst DE, Gottesman K, Mayes MD, Assassi S, Harcourt D, Williamson H, Johnson SR, Körner A, Steen V, Fox RS, Gholizadeh S, Mills SD, Molnar JC, Rice DB, Thombs BD; the SPIN Investigators. Jewett LR, et al. Among authors: gottesman k. Clin Exp Rheumatol. 2016 Sep-Oct;34 Suppl 100(5):92-99. Epub 2016 Aug 1. Clin Exp Rheumatol. 2016. PMID: 27494308
Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort.
Jewett LR, Kwakkenbos L, Carrier ME, Malcarne VL, Harcourt D, Rumsey N, Mayes MD, Assassi S, Körner A, Fox RS, Gholizadeh S, Mills SD, Fortune C, Portales A, Thombs BD; SPIN Investigators. Jewett LR, et al. Body Image. 2017 Mar;20:99-106. doi: 10.1016/j.bodyim.2016.11.007. Epub 2017 Jan 6. Body Image. 2017. PMID: 28068643
Reasons for Not Participating in Scleroderma Patient Support Groups: A Cross-Sectional Study.
Gumuchian ST, Delisle VC, Peláez S, Malcarne VL, El-Baalbaki G, Kwakkenbos L, Jewett LR, Carrier ME, Pépin M, Thombs BD; the Scleroderma Support Group Project Advisory Team. Gumuchian ST, et al. Arthritis Care Res (Hoboken). 2018 Feb;70(2):275-283. doi: 10.1002/acr.23220. Epub 2018 Jan 11. Arthritis Care Res (Hoboken). 2018. PMID: 28217869
Performance of the Patient-Reported Outcomes Measurement Information System-29 in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort Study.
Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst DE, Gottesman K, van den Hoogen F, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ; SPIN Investigators. Kwakkenbos L, et al. Among authors: gottesman k. Rheumatology (Oxford). 2017 Aug 1;56(8):1302-1311. doi: 10.1093/rheumatology/kex055. Rheumatology (Oxford). 2017. PMID: 28431140 Free PMC article.
55 results