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Collaboration between patient organisations and a clinical research sponsor in a rare disease condition: learnings from a community advisory board and best practice for future collaborations.
Roennow A, Sauvé M, Welling J, Riggs RJ, Kennedy AT, Galetti I, Brown E, Leite C, Gonzalez A, Portales Guiraud AP, Houÿez F, Camp R, Gilbert A, Gahlemann M, Moros L, Luna Flores JL, Schmidt F, Sauter W, Finnern H. Roennow A, et al. Among authors: sauve m. BMJ Open. 2020 Dec 16;10(12):e039473. doi: 10.1136/bmjopen-2020-039473. BMJ Open. 2020. PMID: 33328257 Free PMC article.
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: sauve m. BMJ Open. 2013 Aug 7;3(8):e003563. doi: 10.1136/bmjopen-2013-003563. BMJ Open. 2013. PMID: 23929922 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. 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
Exercise habits and factors associated with exercise in systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) cohort study.
Azar M, Rice DB, Kwakkenbos L, Carrier ME, Shrier I, Bartlett SJ, Hudson M, Mouthon L, Poiraudeau S, van den Ende CHM, Johnson SR, Rodriguez Reyna TS, Schouffoer AA, Welling J, Thombs BD; SPIN investigators. Azar M, et al. Disabil Rehabil. 2018 Aug;40(17):1997-2003. doi: 10.1080/09638288.2017.1323023. Epub 2017 May 8. Disabil Rehabil. 2018. PMID: 28478701
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. BMJ Open. 2018 Mar 6;8(3):e018641. doi: 10.1136/bmjopen-2017-018641. BMJ Open. 2018. PMID: 29511009 Free PMC article.
Protocol for a partially nested randomised controlled trial to evaluate the effectiveness of the scleroderma patient-centered intervention network COVID-19 home-isolation activities together (SPIN-CHAT) program to reduce anxiety among at-risk scleroderma patients.
Thombs BD, Kwakkenbos L, Carrier ME, Bourgeault A, Tao L, Harb S, Gagarine M, Rice D, Bustamante L, Ellis K, Duchek D, Wu Y, Bhandari PM, Neupane D, Carboni-Jiménez A, Henry RS, Krishnan A, Sun Y, Levis B, He C, Turner KA, Benedetti A, Culos-Reed N, El-Baalbaki G, Hebblethwaite S, Bartlett SJ, Dyas L, Patten S, Varga J; Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Patient Advisory Team; SPIN Investigators. Thombs BD, et al. J Psychosom Res. 2020 Aug;135:110132. doi: 10.1016/j.jpsychores.2020.110132. Epub 2020 May 14. J Psychosom Res. 2020. PMID: 32521358 Free PMC article. Clinical Trial.
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