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Page 1
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: nielson wr. 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.
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: nielson wr. Rheumatology (Oxford). 2017 Aug 1;56(8):1302-1311. doi: 10.1093/rheumatology/kex055. Rheumatology (Oxford). 2017. PMID: 28431140 Free PMC article.
The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts.
Dougherty DH, Kwakkenbos L, Carrier ME, Salazar G, Assassi S, Baron M, Bartlett SJ, Furst DE, Gottesman K, van den Hoogen F, Malcarne VL, Mouthon L, Nielson WR, Poiraudeau S, Sauvé M, Boire G, Bruns A, Chung L, Denton C, Dunne JV, Fortin P, Frech T, Gill A, Gordon J, Herrick AL, Hinchcliff M, Hudson M, Johnson SR, Jones N, Kafaja S, Larché M, Manning J, Pope J, Spiera R, Steen V, Sutton E, Thorne C, Wilcox P, Thombs BD, Mayes MD; SPIN Investigators. Dougherty DH, et al. Among authors: nielson wr. Rheumatology (Oxford). 2018 Sep 1;57(9):1623-1631. doi: 10.1093/rheumatology/key139. Rheumatology (Oxford). 2018. PMID: 29868924 Clinical Trial.
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.
Changes in mental health symptoms from pre-COVID-19 to COVID-19 among participants with systemic sclerosis from four countries: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study.
Thombs BD, Kwakkenbos L, Henry RS, Carrier ME, Patten S, Harb S, Bourgeault A, Tao L, Bartlett SJ, Mouthon L, Varga J, Benedetti A; SPIN Patient Advisors; SPIN Investigators. Thombs BD, et al. J Psychosom Res. 2020 Dec;139:110262. doi: 10.1016/j.jpsychores.2020.110262. Epub 2020 Oct 3. J Psychosom Res. 2020. PMID: 33070043 Free PMC article.
Factors associated with fears due to COVID-19: A Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 cohort study.
Wu Y, Kwakkenbos L, Henry RS, Carrier ME, Gagarine M, Harb S, Bourgeault A, Tao L, Carboni-Jiménez A, Negeri Z, Patten S, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Thombs BD; SPIN Patient Advisors; SPIN Investigators. Wu Y, et al. J Psychosom Res. 2021 Jan;140:110314. doi: 10.1016/j.jpsychores.2020.110314. Epub 2020 Nov 25. J Psychosom Res. 2021. PMID: 33271402 Free PMC article.
The Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program: protocol for a two-arm parallel partially nested randomized controlled feasibility trial with progression to full-scale trial.
Nordlund J, Henry RS, Kwakkenbos L, Carrier ME, Levis B, Nielson WR, Bartlett SJ, Dyas L, Tao L, Fedoruk C, Nielsen K, Hudson M, Pope J, Frech T, Gholizadeh S, Johnson SR, Piotrowski P, Jewett LR, Gordon J, Chung L, Bilsker D, Levis AW, Turner KA, Cumin J, Welling J, Fortuné C, Leite C, Gottesman K, Sauve M, Rodríguez-Reyna TS, Larche M, van Breda W, Suarez-Almazor ME, Wurz A, Culos-Reed N, Malcarne VL, Mayes MD, Boutron I, Mouthon L, Benedetti A, Thombs BD; SPIN Investigators. Nordlund J, et al. Among authors: nielson wr. Trials. 2021 Nov 27;22(1):856. doi: 10.1186/s13063-021-05827-z. Trials. 2021. PMID: 34838105 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: nielson wr. BMJ Open. 2013 Aug 7;3(8):e003563. doi: 10.1136/bmjopen-2013-003563. BMJ Open. 2013. PMID: 23929922 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. Among authors: nielson wr. Arthritis Care Res (Hoboken). 2016 Aug;68(8):1195-200. doi: 10.1002/acr.22807. Arthritis Care Res (Hoboken). 2016. PMID: 26619042 Free article.
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