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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: fox rs. BMJ Open. 2013 Aug 7;3(8):e003563. doi: 10.1136/bmjopen-2013-003563. BMJ Open. 2013. PMID: 23929922 Free PMC article.
Psychosocial Aspects of Scleroderma.
Kwakkenbos L, Delisle VC, Fox RS, Gholizadeh S, Jewett LR, Levis B, Milette K, Mills SD, Malcarne VL, Thombs BD. Kwakkenbos L, et al. Among authors: fox rs. Rheum Dis Clin North Am. 2015 Aug;41(3):519-28. doi: 10.1016/j.rdc.2015.04.010. Epub 2015 May 27. Rheum Dis Clin North Am. 2015. PMID: 26210133 Review.
Factor structure and convergent validity of the Derriford Appearance Scale-24 using standard scoring versus treating 'not applicable' responses as missing data: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study.
Merz EL, Kwakkenbos L, Carrier ME, Gholizadeh S, Mills SD, Fox RS, Jewett LR, Williamson H, Harcourt D, Assassi S, Furst DE, Gottesman K, Mayes MD, Moss TP, Thombs BD, Malcarne VL; SPIN Investigators. Merz EL, et al. Among authors: fox rs. BMJ Open. 2018 Mar 6;8(3):e018641. doi: 10.1136/bmjopen-2017-018641. BMJ Open. 2018. PMID: 29511009 Free PMC 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: fox rs. 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. Among authors: fox rs. Body Image. 2017 Mar;20:99-106. doi: 10.1016/j.bodyim.2016.11.007. Epub 2017 Jan 6. Body Image. 2017. PMID: 28068643
Validation of the Social Appearance Anxiety Scale in Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.
Mills SD, Kwakkenbos L, Carrier ME, Gholizadeh S, Fox RS, Jewett LR, Gottesman K, Roesch SC, Thombs BD, Malcarne VL; Scleroderma Patient-centered Intervention Network Investigators. Mills SD, et al. Among authors: fox rs. Arthritis Care Res (Hoboken). 2018 Oct;70(10):1557-1562. doi: 10.1002/acr.23514. Arthritis Care Res (Hoboken). 2018. PMID: 29342510
Reliability and Validity of Three Versions of the Brief Fear of Negative Evaluation Scale in Patients With Systemic Sclerosis: A Scleroderma Patient-Centered Intervention Network Cohort Study.
Fox RS, Kwakkenbos L, Carrier ME, Mills SD, Gholizadeh S, Jewett LR, Roesch SC, Merz EL, Assassi S, Furst DE, Gottesman K, Mayes MD, Thombs BD, Malcarne VL; SPIN Investigators. Fox RS, et al. Arthritis Care Res (Hoboken). 2018 Nov;70(11):1646-1652. doi: 10.1002/acr.23532. Arthritis Care Res (Hoboken). 2018. PMID: 29409146
Validation of the Social Interaction Anxiety Scale in scleroderma: a Scleroderma Patient-centered Intervention Network Cohort study.
Gholizadeh S, Kwakkenbos L, Carrier ME, Mills SD, Fox RS, Jewett LR, Gottesman K, Roesch S, Thombs BD, Malcarne VL; SPIN Investigators*. Gholizadeh S, et al. Among authors: fox rs. J Scleroderma Relat Disord. 2018 Feb;3(1):98-105. doi: 10.5301/jsrd.5000264. Epub 2017 Oct 24. J Scleroderma Relat Disord. 2018. PMID: 35382128 Free PMC article.
Psychosocial aspects of systemic sclerosis.
Malcarne VL, Fox RS, Mills SD, Gholizadeh S. Malcarne VL, et al. Among authors: fox rs. Curr Opin Rheumatol. 2013 Nov;25(6):707-13. doi: 10.1097/01.bor.0000434666.47397.c2. Curr Opin Rheumatol. 2013. PMID: 24067378 Review.
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