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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: welling j. BMJ Open. 2020 Dec 16;10(12):e039473. doi: 10.1136/bmjopen-2020-039473. BMJ Open. 2020. PMID: 33328257 Free PMC article.
Association of vocational interventions and work-related factors with disease and work outcomes in people with RMDs: A systematic review.
Wieczorek M, Verstappen SM, Putrik P, Gwinnutt JM, Balanescu A, Bischoff-Ferrari HA, Boonen A, Cavalli G, de Souza S, de Thurah A, Dorner TE, Moe RH, Rodríguez-Carrio J, Silva-Fernández L, Stamm T, Walker-Bone K, Welling J, Zlatković-Švenda M, Guillemin F. Wieczorek M, et al. Among authors: welling j. Semin Arthritis Rheum. 2023 Feb;58:152135. doi: 10.1016/j.semarthrit.2022.152135. Epub 2022 Nov 13. Semin Arthritis Rheum. 2023. PMID: 36434893 Review.
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
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. Rheumatology (Oxford). 2017 Aug 1;56(8):1302-1311. doi: 10.1093/rheumatology/kex055. Rheumatology (Oxford). 2017. PMID: 28431140 Free PMC article.
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.
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.
105 results