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PUBLICATIONS

Publications 2025

PUBLISHED PEER-REVIEWED ARTICLES 2025

 

1. Langleben J, Dal Santo T, Golberg M, Li K, Thombs BD. Comparison of appearance satisfaction and appearance-related social discomfort among people with systematic sclerosis and burn injury. J Scleroderma Relat Disord. 2025;0(0).

 

2. Dal Santo C, Goldberg M, Carrier ME, Harel D, Kwakkenbos L, Bartlett SJ, Fortuné C, Gietzen A, Gottesman K, Guillot G, Lawrie-Jones A, Richard M, Worron-Sauvé M, Mouthon L, Malcarne VL, Benedetti A, Thombs BD. Evaluation of the Coping Strategies Questionnaire-Revised for Fatigue in systemic sclerosis: a Scleroderma Patient-Centered Intervention Network (SPIN) Cohort study. Clin Exp Rheumatol. 2025;43(8):1455-1464.

 

3. Kwakkenbos L, Levis B, Henry RS, Virgili-Gervais G, Carrier ME, Bartlett SJ, Gietzen A, Gottesman K, Guillot G, Hudson M, Lawrie-Jones A, Hummers LK, Malcarne V, Mayes MD, Richard M, Wojeck R, Worron-Sauvé M, Hudson M, Mouthon L, Benedetti A, Thombs BD, SPIN Investigators. Fatigue levels and associated factors in systemic sclerosis: a cross-sectional study of 2,385 Scleroderma Patient-centered Intervention Network Cohort participants. Rheumatology. 2025;64(5):2810-2820.

 

4. Thombs BD, Adams C, Nassar EL, Carrier ME, Golberg M, Bharthi K, Wurz A, South A, Kwakkenbos L, Hoa S, Rice DB, Guillot G, Lawrie-Jones A, Sauvé M, Bartlett SJ, Fortune C, Gietzen A, Gottesman K, Hudson M, Hummers LK, Malcarne VL, Mayes MD, Richard M, Stempel J, Wojeck RK, Blagrave K, Boruff JT, Cook V, Culos-Reed N, Fröbert O, Gillies K, Granikov V, Hemkens LG, Jimenez EY, Kocher A, Leite C, Lim MAWT, Maltez N, Michalski J, Mieszczak T, Ndosi M, Pope J, Rannou F, Rozee K, Straus SE, Sydes MR, Thabane L, Varga J, Yap T, Zwarenstein M, Mouthon L, Benedetti A, SPIN Investigators. Master protocol for a series of cohort-based randomized controlled trials to test tools to communicate research results to study participants and others with relevant lived experience: the SPIN-CLEAR Trials. Trials. 2025;26(1):149.

 

5. Xu M, Harel D, Carrier ME, Kwakkenbos L, Bartlett SJ, Gottesman K, Guillot G, Hummers L, Malcarne VL, Richard M, Thombs BD, SPIN Investigators. Differential item functioning on the Cochin Hand Function Scale among people with systemic sclerosis by language, sex, and disease subtype: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Arthritis Care Res. 2025;77(3):393-401.

 

6. Gagarine M, Cañedo-Ayala M, Cook V, Discepola MN, Guillot G, Leader DM, Lim M, Yap T, Furst D, Gietzen A, Lapointe McKenzie JA, Van Pelt S, Vidiricaire L, Carrier ME, Krishnan A, Tao L, Kwakkenbos L, Thombs BD. Oral health in systemic sclerosis: a scoping review. J Scleroderma Relat Disord. 2025;10(1):13-26.

 

7. Thombs BD, Levis B, Carrier ME, Dyas L, Konrad V, Sauvé M, Benedetti A, SPIN-SSLED Support Group Leader Advisory Team. Association of support group leader experience, age, and education with Scleroderma Support group Leader EDucation (SPIN-SSLED) Program outcomes: secondary analysis of a two-arm parallel partially nested randomized controlled trial. J Scleroderma Relat Disord. 2025;10(1):65-74.

Publications 2024

PUBLISHED PEER-REVIEWED ARTICLES 2024

 

1. Adams C, Nassar EL, Nordlund J, Dal Santo C, Rice DB, Cook V, Boruff JT, Thombs BD. Engagement of people with lived experience in studies published in high-impact rheumatology journals: a meta-research review. Lancet Rheumatol. 2024;6(9):e593-e595.

 

2. Adams C, Nassar EL, Carrier ME, Kwakkenbos L, Henry RS, Virgili-Gervais G, Hu S, Bartlett SJ, Fortuné C, Gietzen A, Gottesman K, Guillot G, Hudson M, Lawrie-Jones A, Lewis N, Malcarne V, Mayes MD, Patten SB, Richard M, Sauvé M, Varga J, Welling J, Wojeck R, Mouthon L, Benedetti A, Thombs BD, SPIN Investigators. Changes in work and adequacy of financial resources during COVID-19 among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) study. J Scleroderma Relat Disord. 2024;9(3):242-247.

 

3. Adams C, Nassar EL, Nordlund J, Hu S, Rice DB, Cook V, Boruff JT, Thombs BD. Engagement of people with lived experience in studies published in high-impact psychiatry journals: meta-research review. Res Involv Engagem. 2024;10(1):115.

 

4. Alkan A, Carrier ME, Henry RS, Kwakkenbos L, Bartlett SB, Gietzen A, Gottesman K, Guillot G, Lawrie-Jones A, Hudson M, Hummers LK, Malcarne VL, Mayes MD, Mouthon L, Richard M, Wojeck RK, Worron-Sauvé M, Benedetti A, Thombs BD. Minimal detectable changes of the HAQ-DI, PROMIS-29v2.0 Domains, and PHQ-8 in systemic sclerosis: a SPIN Cohort cross-sectional study. Arthritis Care Res. 2024;76(11):154901557.

 

5. Virgili-Gervais G, Matthews B, Nassar EL, Carrier ME, Kwakkenbos L, Pauling JD, Bartlett SJ, Gietzen A, Gottesman K, Guillot G, Hudson M, Hummers LK, Lawrie-Jones A, Malcarne VL, Mayes MD, Richard M, Sauvé M, Wojeck RK, Mouthon L, Benedetti A, Thombs BD, SPIN Investigators. The association of outdoor temperature and self-reported Raynaud's phenomenon severity among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study. Lancet Rheumatol. 2024;6(10):e684-e692.

 

6. Nassar EL, Virgili-Gervai G, Carrier ME, Kwakkenbos L, Henry RS, Hu S, Provencher S, Bartlett SJ, Mouthon L, Patten SB, Varga J, Benedetti A, Thombs BD, SPIN COVID-19 Patient Advisory Team, SPIN Investigators. Experiences with telehealth during and after the COVID-19 pandemic and preferences for future care of people with systemic sclerosis: a cross-sectional study. Lancet Rheumatol. 2024;6(10):e660-e663.

 

7. Dal Santo T, Rice DB, Carrier ME, Virgili-Gervais G, Levis B, Kwakkenbos L, Golberg M, Bartlett SJ, Gietzen A, Gottesman K, Guillot G, Hudson M, Hummers LK, Malcarne VL, Mayes MD, Mouthon L, Richard M, Sauvé M, Wojeck RK, Geoffroy M-C, Benedetti A, Thombs BD, SPIN Investigators. Factors associated with physical function among people with systemic sclerosis: a SPIN Cohort cross-sectional study. Rheumatology. 2024;63(10): 2660-2669.

 

8. Østbø N, Yakes Jimenez E, Carrier ME, Kwakkenbos L, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) Diet and Nutrition Education Patient Advisory Team, SPIN Investigators. Use and perceptions of nutrition information resources among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study. Clin Exp Rheumatol. 2024;42(8):1606-1614.

 

9. Lakin KS, Wu Y, Gordon JK, Kwakkenbos L, Carrier ME, Henry RS, Denton CP, Mouthon L, Spiera RF, Thombs BD, SPIN COVID-19 Vaccination Patient Advisory Team, SPIN Investigators. COVID-19 vaccinations and infections among individuals with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Semin Arthritis Rheum. 2024;67:152453.

 

10. Virgili-Gervais G, Henry RS, Kwakkenbos L, Carrier ME, Patten S, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Thombs BD, SPIN COVID-19 Patient Advisory Team, SPIN Investigators. Association of COVID-19 vaccination and anxiety symptoms: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort longitudinal study. J Psychosom Res. 2024;184:111852.

 

11. Dal Santo T, Golberg M, Nassar EL, Carrier ME, Hu S, Kwakkenbos L, Bartlett SJ, Fox RS, Lee Y, Varga J, Benedetti A, Thombs BD, Scleroderma Patient-centered Intervention Network Pain Patient Advisory Team. Protocol for the development of a tool to map systemic sclerosis pain sources, patterns, and management experiences: a Scleroderma Patient-Centered Intervention Network patient-researcher partnership: BMC Rheumatol. 2024:8:28.

 

12. Wurz A, Henry RS, Kwakkenbos L, Carrier ME, Patten SB, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Culos-Reed SN, Thombs BD, SPIN COVID-19 Patient Advisory Team, SPIN Investigators. Physical activity during COVID-19 in people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort longitudinal study. J Scleroderma Relat Disord. 2024;9(2):110-116.

 

13. Rapoport CS, Choi AK, Kwakkenbos L, Carrier ME, Henry RS, Levis B, Bartlett SJ, Gietzen A, Gottesman K, Guillot G, Lawrie-Jones A, Mayes MD, Mouthon L, Richard M, Worron-Sauvé M, Benedetti A, Roesch SC, Thombs BD, Malcarne VL, SPIN Investigators. Moderators of loneliness trajectory in people with systemic sclerosis during the COVID-19 pandemic: a SPIN COVID-19 Cohort longitudinal study. Int J Behav Med. 2024;31(3):352-362.

 

14. Neyer MA, Henry RS, Carrier ME, Kwakkenbos L, Virgili-Gervais G, Wojeck RK, Wurz A, Gietzen A, Gottesman K, Guillot G, Lawrie-Jones A, Mayes MD, Mouthon L, Nielson WR, Richard M, Sauvé M, Harel D, Malcarne VL, Bartlett SJ, Benedetti A, Thombs BD, SPIN Investigators. The association of resilience and positive mental health in systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study. J Psychosom Res. 2024;179:11648.

 

15. Choi AK, Rapoport C, Kwakkenbos L, Carrier ME, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, SPIN Investigators. Measurement equivalence of the English and French versions of the Self-Efficacy to Manage Chronic Disease Scale: a Scleroderma Patient-centered Intervention Network Study. Qual Life Res. 2024;33(3)843-851.

 

16. Dal Santo T, Rice DB, Carrier ME, Virgili-Gervais G, Levis B, Kwakkenbos L, Bartlett SJ, Gietzen A, Gottesman K, Guillot G, Hudson M, Hummers LK, Malcarne VL, Mayes MD, Mouthon L, Richard M, Sauvé M, Wojeck RK, Geoffroy M-C, Benedetti A, Thombs BD, SPIN Investigators. Factors associated with satisfaction with social roles and activities among people with systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study. RMD Open. 2024;10:e003876.

 

17. Wurz A, Duchek D, Ellis K, Bansal M, Carrier M-E, Tao L, Dyas L, Kwakkenbos L, Levis B, El-Baalbaki G, Rice DB, Wu Y, Henry RS, Bustamante L, Harb S, Hebblethwaite S, Patten SB, Bartlett S, Varga J, Mouthon L, Markham S, Thombs BD, Culos-Reed SN, SPIN-CHAT Patient Advisory Team and Program Facilitators on behalf of the Scleroderma Patient-centered Intervention Network Investigators. A qualitative interview study exploring the psychological health impacts of the SPIN-CHAT Program among people with systemic sclerosis at the onset of COVID-19: Perceptions of trial participants and research team members. Disabil Rehabil. 2024;46(3):533-545.

 

18. Wurz A, Ellis K, Nordlund J, Carrier ME, Cook V, Gietzen A, Adams C, Nassar EL, Rice DB, Fortune C, Guillot G. Researcher and patient experiences of co-presenting research to people living with systemic sclerosis at a patient conference: content analysis of interviews. Res Involv Engagem. 2024;10(1):1-9.

Publications 2023

PUBLISHED PEER-REVIEWED ARTICLES 2023

 

1. Wojeck RK, Knisely MR, Bailey DE, et al. Patterns of patient-reported symptoms and association with sociodemographic and systemic sclerosis disease characteristics: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort cross-sectional study. EClinicalMedicine. 2023;62:102104.

 

2. Henry RS, Kwakkenbos L, Carrier ME, Patten S, Bartlett SJ, Mouthon L, Varga J, Benedetti A, Thombs BD. Mental health symptoms in scleroderma during COVID-19: a Scleroderma Patient-centred Intervention Network (SPIN) cohort longitudinal study. Clin Exp Rheumatol. 2023;41(8):1639-1643

 

3. Provencher S, Henry RS, Bacalao C, Carrier ME, Kwakkenbos L, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) Support Group Project Advisory Team. Support and information needs of people with systemic sclerosis by time since diagnosis: A cross-sectional study. J Scleroderma Relat Disord. 2023;8(3):247-252.

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4. Neyer, MA, Henry, RS, Carrier M-E, Kwakkenbos, L, Wojeck RW, Gietzen A, et al. Validity, reliability, and differential item functioning of english and french versions of the 10-item connor-davidson resilience scale in systemic sclerosis: a scleroderma patient-centered intervention network cohort study. Arthritis Care Res. 2023. 75(11); 2369-2378.

 

5. Rapoport C, Choi AK, Kwakkenbos L, Carrier ME, Henry RS, Mouthon L, Roesch SC, Thombs BD, Malcarne V, SPIN COVID-19 Patient Advisory Team, SPIN Investigators. Evaluation of measurement properties and differential item functioning in English and French versions of the UCLA Loneliness Scale-6: A Scleroderma Patient-Centered Intervention Network (SPIN) study. Arthritis Care Res. 2023;75(10):2158-2165.

 

6. Wurz A, Ellis K, Duchek D, Bansal M, Carrier M-E, Tao L, et al. Exploring research team members' and trial participants' perceptions of acceptability and implementation within one videoconference-based supportive care program for individuals affected by systemic sclerosis during COVID-19: a qualitative interview study. Transl Behav Med. 2023;13(7):442-452.

 

7. Nassar EL, Abdulkareen DA, Thombs BD. Prevalence of mood and anxiety disorders and factors associated with symptoms in systemic sclerosis: results from a living systematic review. Sci Rep. 2023;13:5181.

 

8. Cook V, Gietzen A, Nassar EL, Wurz A, Thombs BD. Patient-researcher co-presentation of research results to people living with scleroderma. Lancet Rheumatol. 2023;5(4):E180-E181.

 

9. Kirren Q, Daste C, Foissac F, Abdoul H, Papelard A, Alami S, Kwakkenbos L, Carrier ME, Roren A, Lefèvre-Colau MM, Poiraudeau S, Rannou F, Thombs BD, Mouthon L, Nguyen C. Differences in disability perception in systemic sclerosis: a mirror survey of patients and health care providers. J Clin Med. 2023;12(4):1359.

Publications 2022

PUBLISHED PEER-REVIEWED ARTICLES 2022

 

1. Kwakkenbos L, Carrier ME, Welling J, Levis B, Levis AW, Sauve M, Turner K, Tao L, Aguila K, Carboni-Jiménez A, Cañedo-Ayala M, Harb S, van den Ende C, Hudson M, van Breda W, Nguyen C, Boutron I, Rannou F, Thombs BD, Mouthon L, SPIN Investigators. Randomized controlled trial of an internet-based self-guided hand exercise program to improve hand function in people with systemic sclerosis: the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND) Trial. Trials. 2022;994:23.

 

2. Thombs BD, Levis B, Carrier ME, Dyas L, Nordlund J, Tao L, Aguila K, Bourgeault A, Konrad V, Sauvé M, Connolly K, Henry RS, Øtsbo N, Levis AW, Kwakkenbos L, Malcarne VL, El-Baalbaki G, Hudson M, Wurz A, Culos-Reed N, Platt RW, Benedetti A, SPIN-SSLED Support Group Advisory Team. Effects of a support group leader education program jointly developed by health professionals and patients on peer leader self‑efficacy among leaders of scleroderma support groups: a two-arm parallel partially nested randomised controlled trial. Orphanet J Rare Dis. 2022;17:396.

 

3. Carboni-Jiménez A, Rice DB, Levis B, Cañedo-Ayala M, Imran M, Chiovitte M, Benedetti A, Thombs BD. Intensity of care and perceived burden among informal caregivers to persons with chronic medical conditions: a systematic review and meta-analysis. Desabil Rehabil. 2022;44(21):6230-6246.

 

4. Becetti K, Nguyen J, Kwakkenbos L, Carrier ME, Tao L, Gordon JK, Mancuso C, Welling J, Mouthon L, Bartlett SJ, Malcarne V, Thombs BD, Spiera R, SPIN Investigators. Mental health care utilization and associated factors in systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study. ACR Open Rheumatol. 2022;4(8):647-657.

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5. Kwakkenbos L, Carrier ME, Welling J, Turner KA, Cumin J, Pépin M, van den Ende C, Schouffoer AA, Hudson M, van Breda W, Sauve M, Mayes MD, Malcarne VL, Nielson WR, Nguyen C, Boutron I, Rannou F, Thombs BD, Mouthon L, SPIN Investigators. Randomized Feasibility Trial of the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND). PeerJ. 2022;10:e13471.

 

6. Le Ralle MF, Daste C, Rannou F, Kwakkenbos L, Carrier ME, Lefèvre-Colau MM, Roren A, Thombs BD, Mouthon L, Nguyen C. Patient acceptable symptom state for burden from appearance changes in people with systemic sclerosis: a cross-sectional survey. J Rheumatol. 2022;49(8):903-907.

 

7. Harb S, Peláez S, Carrier ME, Kwakkenbos L, Bartlett SJ, Hudson M, Mouthon L, Sauvé M, Welling J, Shrier I, Thombs BD, SPIN Physical Activity Enhancement Patient Advisory Team, SPIN Investigators. Barriers and facilitators to physical activity for people with scleroderma: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Arthritis Care Res. 2022;74(8):1300-1310.

 

8. Gordon JK, Showalter K, Wu Y, Kwakkenbos L, Carrier ME, Henry RS, Østbo N, Nordlund J, Bourgeault A, Cañedo-Ayala M, Carboni-Jiménez A, Denton CP, Mouthon L, Thombs BD, Spiera RF, SPIN COVID-19 Vaccination Patient Advisory Team, SPIN Investigators. Systemic sclerosis and COVID-19 vaccines: A SPIN Cohort study. Lancet Rheumatol. 2022;4:e243-246

 

9. Kwakkenbos L, Østbo N, Carrier ME, Nielsen WR, Fedoruk C, Levis B, Henry RS, Pope J, Frech T, Gholizadeh S, Johnson S, Piotrowski P, Jewett LR, Gordon J, Chung L, Bilsker D, Tao L, Turner KA, Cumin J, Welling J, Fortuné C, Leite C, Gottesman K, Sauve M, Rodríguez Reyna TS, Hudson M, Larche M, van Breda W, Suárez-Almazor ME, Bartlett SJ, Malcarne VL, Mayes MD, Boutron I, Mouthon L, Benedetti A, Thombs BD, SPIN Investigators. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-management (SPIN-SELF) Program. Pilot Feasibility Stud. 2022;8(1):45.

 

10. Henry RS, Kwakkenbos L, Carrier ME, Negeri Z, Bourgeault A, Patten S, Bartlett S, Mouthon L, Varga J, Benedetti A, Thombs BD, SPIN COVID-19 Patient Advisors, SPIN Investigators. Mental health before and during the pandemic in people with systemic sclerosis. Lancet Rheumatol. 2022;4(2):E82-E85.

Publications 2021

PUBLISHED PEER-REVIEWED ARTICLES 2021

 

1. 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. 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. Trials. 2021;22:856.

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2. Lee VC, Fox RS, Kwakkenbos L, Carrier ME, Levis B, Welling J, Sauvé M, Bartlett SJ, Benedetti A, Mouthon L, Varga J, Thombs BD, SPIN Investigators. Pain intensity and interference levels and associated factors in systemic sclerosis: a cross-sectional study of 2157 participants from the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Lancet Rheumatol. 2021;3:e844-e854.

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3. Harb S, Cumin J, Rice DB, Peláez S, Hudson M, Bartlett SJ, Roren A, Furst DE, Frech TM, Nguyen C, Nielson WR, Thombs BD, Shrier I, SPIN-PACE Patient Advisory Team. Identifying barriers and facilitators to physical activity for people with scleroderma: A nominal group technique study.Disabil Rehabil. 2021;43(23):3339-3346.

 

4. Wojeck RK, Silva SG, Bailey DE, Knisely MR, Kwakkenbos L, Carrier ME, Nielson WR, Bartlett SJ, Pope J, Thombs BD, and the SPIN Investigators. Pain and self-efficacy among patients with systemic sclerosis: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Nurs Res. 2021;70(5):334-343.

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5. Østbo N, Yakes Jimenez E, Harb S, Bourgeault A, Carrier ME, Thombs BD, Scleroderma Patient centered Intervention Network (SPIN) Diet and Nutrition Education Patient Advisory Team. Nutritioninformation resources used by people with systemic sclerosis and perceived advantages and disadvantages: a nominal group technique study. ACR Open Rheumatol. 2021;3(8):540-549.

 

6. Thombs BD, Kwakkenbos L, Levis B, Bourgeault A, Henry RS, Levis AW, Harb S, Tao L, Carrier ME, Bustamente L, Duchek D, Dyas L, El-Baalbaki G, Ellis K, Rice DB, Wurz A, Nordlund J, Gagarine M, Turner KA, Østbø N, Culos-Reed N, Hebblethwaite S, Patten S, Bartlett SJ, Varga J, Mouthon L, Markham S, Martin MS, Benedetti A, and the SPIN-CHAT Patient Advisory Team and Program Facilitators on behalf of the Scleroderma Patient-centered Intervention Network Investigators. Effects of a multi-faceted education and support program on anxiety symptoms among people with systemic sclerosis with at least mild anxiety during COVID-19: a two-arm parallel partially nested randomised controlled trial. Lancet Rheumatol. 2021;3:e427-e437.

 

7. Kwakkenbos L, Carboni-Jiménez A, Carrier ME, Pépin M, Peláez S, Malcarne VL, El-Baalbaki G, Thombs BD, Scleroderma Patient-centered Network (SPIN) Support Group Project Advisory Team. Reasons for not participating in scleroderma support groups: a comparison of results from the North American and European Scleroderma Support Group Surveys. Disabil Rehabil. 2021;43(9):1279-1286.

 

8. Discepola MN, Carboni-Jiménez A, Kwakkenbos L, Henry RS, Boruff J, Krishnan A, Boström C, Culos-Reed SN, Hudson M, Leader DM, Mattsson M, Mouthon L, Wojeck R, Yakes Jimenez E, Sauve M, Welling J, Guillot G, Benedetti A, Thombs BD. Effects of Nonpharmacological and Nonsurgical Interventions on Health Outcomes in Systemic Sclerosis: Protocol for A Living Systematic Review. BMJ Open. 2021;11:e047428.

 

9. Gholizadeh S, Rice DB, Carboni-Jiménez A, Kwakkenbos L, Boruff J, Malcarne VL, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) Body Image Patient Advisory Team. Effects of cosmetic and other camouflage interventions on appearance-related and psychological outcomes among adults with visible differences: a systematic review. BMJ Open. 2021;11:e046634.

 

10. 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 and SPIN Investigators. Factors associated with fears due to COVID-19: a Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Cohort study. J Psychosom Res. 2021;140:110314.

Publications 2020

PUBLISHED PEER-REVIEWED ARTICLES 2020

 

1. Wu Y, Kwakkenbos L, Henry RS, Tao L, Harb S, Bourgeault A, Carrier ME, Levis B, Sun Y, Bhandari PM, Carboni-Jiménez A, Gagarine M, He C, Krishnan A, Negeri Z, Neupane D, Bartlett S, Benedetti A, Thombs BD, Scleroderma Patient-centered Intervention Network (SPIN) COVID-19 Investigators,12 SPIN COVID-19 Patient Advisory Team. Validation of the COVID-19 Fears Questionnaires for Chronic Medical Conditions: a Scleroderma Patient-centered Intervention Network COVID-19 Cohort Study. J Psychosom Res. 2020;139:110271.

2. Sommer SJ, Harel D, Kwakkenbos L, Carrier ME, Gholizadeh S, Gottesman K, Malcarne V, Thombs BD, SPIN Investigators. Assessing Differential Item Functioning for the Social Appearance Anxiety Scale A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. BMJ Open. 2020;10:e037639.

3. 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. 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. J Psychosom Res. 2020;139:110262.

4. Daste C, Abdoul H, Foissac F, Papelard A, Alami S, Kwakkenbos L, Carrier ME, Lefèvre-Colau M-M, Thombs BD, Poiraudeau S, Rannou F, Mouthon L, Nguyen C. Development of a new patient-reported outcome measure to assess activities and participation in people with systemic sclerosis: The Cochin 17-item Scleroderma Functional Scale (CSF-17). Br J Dermatol. 2020;183(4):710-718.

5. Rice DB, Carboni-Jiménez A, Cañedo-Ayala M, Turner KA, Chiovitti M, Levis AW, Thombs BD. Demonstrated and perceived benefits and factors that influence the ability to establish and maintain services for informal caregivers of people with rare diseases: a scoping review. The Patient - Patient–Centered Outcomes Research. 2020;13(5):471-519. 

6. Harb S, Cumin J, Rice DB, Peláez S, Hudson M, Bartlett SJ, Roren A, Furst DE, Frech TM, Nguyen C, Nielson WR, Thombs BD, Shrier I, SPIN-PACE Patient Advisory Team. Identifying barriers and facilitators to physical activity for people with scleroderma: A nominal group technique study. Disabil Rehabil. 2020;17:1-8.

7. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier ME, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Scleroderma Caregiver Advisory Team. Challenges and support service preferences of informal caregivers of people with systemic sclerosis: A cross-sectional survey. Disabil Rehabil. 2020;42(16):2304-2310.

8. Milette K, Thombs BD, Dewez S, Körner A, Peláez S. Scleroderma patient perspectives on social support from close social relationships. Disabil Rehabil. 2020;42(11):1588-1598.

9. 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, Krishan 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. 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. J Psychosom Res. 2020;135:110132.

10. Carrier M, Kwakkenbos L, et al. Protocol for a Randomized Feasibility Trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program. JMIR - Res Protoc. 2020;9(4):e16799.

11. Cañedo-Ayala M, Rice DB, Levis B, Carrier ME, Cumin J, Malcarne VL, Hagedoorn M, Thombs BD, the Scleroderma Caregiver Advisory Committee. Factors associated with symptoms of depression among informal caregivers of people with systemic sclerosis: a cross-sectional study, Disabil Rehabil. 2020;42(3):394-9.

Publications 2019

PUBLISHED PEER-REVIEWED ARTICLES 2019

 

1. Thombs BD, Aguila K, Dyas L, Carrier, ME, Fedoruk C, Horwood L, Cañedo-Ayala M, Sauvé M, Kwakkenbos L, Malcarne VL, El-Baalbaki G, Peláez S, Connolly K, Hudson M, Platt RW, SPIN-SSLED Support Group Advisory Team. Protocol for a partially nested randomized controlled trial to evaluate the effectiveness of the Scleroderma Patient-centered Intervention Network Support Group Leader EDucation (SPIN-SSLED) Program. Trials. 2019;20(717):1-12.

 

2. Rice DB, Cañedo-Ayala M, Carboni-Jiménez A, Carrier ME, Cumin J, Malcarne V, Hagedoorn M, Thombs BD, Scleroderma Caregiver Advisory Team. Challenges and support service preferences of informal caregivers of people with systemic sclerosis: A cross-sectional survey. Disabil Rehabil. 2020;42(16):2304-2310.

3. Thombs BD, Dyas L, Pépin M, Aguila K, Carrier ME, Tao L, Harb S, Malcarne VL, El-Baalbaki G, Peláez S, Sauvé M, Hudson M, Platt RW, SPIN-SSLED Patient Advisory Team. Scleroderma Patient-centered Intervention Network – Scleroderma Support group Leader EDucation (SPIN-SSLED) Program: Non-randomised feasibility trial. BMJ Open. 2019;9:e029935.

4. Kwakkenbos L, Carboni-Jiménez A, Carrier ME, Pépin M, Peláez S, Malcarne VL, El-Baalbaki G, Thombs BD. the Scleroderma Patient-centered Intervention Network (SPIN) Support Group Project Advisory Team. Reasons for Not Participating in Scleroderma Patient Support Groups: a Comparison of Results from the North American and European Scleroderma Support Group Surveys. Disabil Rehabil. In press.

 

5. Becetti K, Kwakkenbos L, Carrier ME, Gordon J, Nguyen J, Mancuso C, Mouthon L, Nguyen C, Rannou F, Welling J, Thombs BD, Spiera R. Physical or occupational therapy utilization in systemic sclerosis: a Scleroderma Patient-centered Intervention Network Cohort study. J Rheumatol. 2019;46(12):1605-13.

6. Kwakkenbos L, Cumin J, Carrier M-E, Bartlett SJ, Malcarne VL, Mouthon L, Nielson WR, Rannou R, Welling J, Thombs BD, SPIN Investigators. Factors associated with patient-reported likelihood of using online self-care interventions: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. BMJ Open. 2019;9:e029542.

 

7. Milette K, Thombs BD, Maiorino K, Nielson WR, Körner A, Peláez S. Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program. Disabil Rehabil. 2019;41(21):2506-2515.

 

8. Pépin M, Kwakkenbos L, Carrier ME, Peláez S, El-Baalbaki G, Malcarne VL, Thombs BD, Scleroderma Patient-centered Network (SPIN) Support Group Project Advisory Team. Reasons for attending support groups and organizational preferences: a replication study using the North American Scleroderma Support Group Survey. J Scleroderma Relat Disord. 2019;4(3): 173-186.

 

9. Tao L, Fedoruk C, Turner KA, Cumin J, Carrier ME, Carboni-Jiménez A, Pépin M, Kwakkenbos L, Thombs BD, SPIN Patient Advisory Board. The Scleroderma Research Topics Survey for patients and health care professionals: A Scleroderma Patient-centered Intervention Network (SPIN) project. J Scleroderma Relat Disord. 2019;4(3): 165-172.

 

10. Gumuchian ST, Delisle VC, Kwakkenbos L, Pépin M, Carrier ME, Malcarne CL, Peláez S, El-Baalbaki G, Thombs BD, Scleroderma Support Group Project Advisory Team. Reasons for attending support groups and organizational preferences: the European Scleroderma Support Group Members Survey. Disabil Rehabil. 2019;41(8):974-982.

 

11. Delisle VC, Gumuchian ST, El-Baalbaki G, Körner A, Malcarne VL, Peláez S, Carrier ME, Pépin M, Thombs BD, Scleroderma Support Group Project Advisory Team. Training and support needs of scleroderma support group facilitators: the North American Scleroderma Support Group Facilitators Survey. Disabil Rehabil. 2019;41(20):2477-2482.

 

12. Turner KA, Rice DB, Carboni-Jiménez A, Boruff J, Thombs BD. Effects of training and support programs for leaders of illness-based support groups: commentary and updated evidence. Syst Rev. 2019;8(1):67.

 

13. Harel D, Mills SD, Kwakkenbos L, Carrier ME, Nielsen K, Portales A, Bartlett SJ, Malcarne VL, Thombs BD, SPIN Investigators. Shortening patient-reported outcome measures through Optimal Test Assembly: Application to the Social Appearance Anxiety Scale in the Scleroderma Patient-centered Intervention Network Cohort. BMJ Open. 2019;9:e024010.

Publications 2018

PUBLISHED PEER-REVIEWED ARTICLES 2018

​

1. Azar M, Rice DB, Kwakkenbos L, Carrier M-E, 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. Exercise habits and factors associated with exercise in systemic sclerosis: a Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Disabil Rehabil. 2018;40(17):1997-2003

 

2. Dougherty DH, Kwakkenbos L, Carrier M-E, 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 CD, Dunne JV, Fortin P, Frech T, Gill A, Gordon J, Herrick AL, Hinchcliff M, Hudson M, Johnson SR, Jones N, Kafaja S, Larche M , Manning J, Pope J, Spiera R, Steen V, Sutton E, Thorne C, Wilcox P, Thombs BD, Mayes MD, SPIN Investigators. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: baseline clinical features and comparison to other large scleroderma cohorts. Rheumatology. 2018;57(9):1623-1631.

 

3. Kwakkenbos L, Sanchez TA, Turner KA, Mouthon L, Carrier ME, Hudson M, van den Ende CH, Schouffoer AA, Welling JJ, Sauvé M, Thombs BD. The association of sociodemographic and disease variables with hand function: a Scleroderma Patient-centered Intervention Network cohort study. Clin Exp Rheumatol. 2018;36(Suppl. 113):S88-S94.

 

4. 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, Marlcarne BL, and the SPIN Investigators. Validation of the Brief Fear of Negative Evaluation Scale‐II in patients with systemic sclerosis: A Scleroderma Patient‐centered Intervention Network Cohort study. Arthritis Care Res. 2018;70(11): 1646-1652.

 

5. Mills SD, Kwakkenbos L, Carrier ME, Gholizadeh S, Fox RS, Jewett LR, Gottesman K, Roesch SC, Thombs BD, Malcarne VL, and the SPIN Investigators. Validation of the Social Appearance Anxiety Scale in Patients with Systemic Sclerosis: A Scleroderma Patient-centered Intervention Network Cohort Study. Arthritis Care Res. 2018;70(10):1557-1562.

 

6. Pal NE, Gumuchian ST, Delisle VC, Pépin M, Malcarne VL, Carrier M-E, Kwakkenbos L, Peláez S, El-Baalbaki G, Thombs BD, Scleroderma Support Group Project Advisory Team. Development and preliminary validation of the Scleroderma Support Group Leader Self-efficacy Scale. J Scleroderma Relat Disord. 2018;3(1):106-111. [IF=N/A].

 

7. Carrier M-E, Kwakkenbos L, Boutron I, Welling J, Sauve M, van den Ende C, Schouffoer AA, Hudson M, Thombs BD, Mouthon L, SPIN Investigators. Randomized Feasibility Trial of the Scleroderma Patient-centered Intervention Network Hand Exercise Program (SPIN-HAND): Study Protocol. Journal of Scleroderma and Related Disorders. 2018;3(1):91-97. [IF=N/A].

 

8. Gholizadeh S, Kwakkenbos L, Carrier M-E, Mills SD, Fox RS, Jewett LR, Gottesman K, Roesch S, Thombs BD, Malcarne VL, SPIN Investigators. Validation of the Social Anxiety Interaction Scale (SIAS-6) in systemic sclerosis: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. J Scleroderma Relat Disord. 2018;3(1):98-105. [IF=N/A]

 

9. 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 T, Thombs BD, Malcarne VL, SPIN Investigators. Factor structure and convergent validity of the Derriford Appearance Scale-24 using standard scoring versus using “not applicable” responses as missing data: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. BMJ Open. 2018;8:e018641.

 

10. Rice DB, Cañedo Ayala M, Turner KA, Gumuchian ST, Malcarne VL, Hagedoorn M, Thombs BD, Scleroderma Caregiver Advisory Committee. Use of the nominal group technique to identify stakeholder priorities and inform survey development: an example with informal caregivers of people with scleroderma. BMJ Open. 2018;8:e019726.

 

11. Gumuchian ST, Delisle VC, Peláez S, Malcarne VL, El-Baalbaki G, Kwakkenbos L, Jewett LR, Carrier M-E, Pépin M, Thombs BD, Scleroderma Support Group Project Advisory Team. Reasons for not participating in scleroderma patient support groups: A cross-sectional study. Arthritis Care Res. 2018;70(2):275-283.

12. Gumuchian ST, Peláez S, Delisle VC, Carrier ME, Jewett LR, El-Baalbaki G, Fortune C, Hudson M, Körner A, Kwakkenbos L, Bartlett SJ. Understanding coping strategies among people living with scleroderma: a focus group study. Disabil Rehabil. 2018;40(25):3012-21.

Publications 2017

PUBLISHED PEER-REVIEWED ARTICLES 2017

 

1. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne V, Harcourt D, Rumsey N, Mayes MD, Assassi S, Körner A, Fox RS, Gholizadeh S, Mills SD, Fortune C, Portales A, Thombs BD, SPIN Investigators. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Body Image. 2017;31(20):99-106.

 

2. Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst D, Gottesman K, van den Hoogen FHJ, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ, SPIN investigators. Validation of the Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29) in Scleroderma and Associations with Clinical Characteristics: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Rheumatology. 2017;56(8)1302-1311.

 

3. Delisle VC, Gumuchian ST, Rice DB, Levis AW, Kloda LA, Körner A, Thombs BD. Perceived benefits and factors that influence the ability to establish and maintain patient support groups in rare diseases: A scoping review. The Patient - Patient–Centered Outcomes Research. 2017;10(3):283-293.

 

4. Thombs BD, Kwakkenbos L, Riehm KE, Saadat N, Fedoruk C. Comparison of self-efficacy for managing chronic disease between patients with systemic sclerosis and other chronic conditions: systematic review. Rheumatol Int. 2017;37(2):281-292.

Publications 2016

PUBLISHED PEER-REVIEWED ARTICLES 2016

 

1. Jewett LR, Kwakkenbos L, Carrier M-E, Malcarne V, Harcourt D, Rumsey N, Mayes MD, Assassi S, Körner A, Fox RS, Gholizadeh S, Mills SD, Fortune C, Portales A, Thombs BD, SPIN Investigators. Validation of the Body Concealment Scale for Scleroderma (BCSS): Replication in the Scleroderma Patient-centered Intervention Network (SPIN) Cohort. Body Image. In press.

2. Kwakkenbos L, Thombs BD, Khanna D, Carrier ME, Baron M, Furst D, Gottesman K, van den Hoogen FHJ, Malcarne VL, Mayes MD, Mouthon L, Nielson WR, Poiraudeau S, Riggs R, Sauvé M, Wigley F, Hudson M, Bartlett SJ, SPIN investigators. Validation of the Patient-Reported Outcomes Measurement Information System-29 (PROMIS-29) in Scleroderma and Associations with Clinical Characteristics: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Rheumatology. In press.    

 

3. Levis AW, Harel D, Kwakkenbos L, Carrier ME, Mouthon L, Poireadeau S, Bartlett SJ, Khanna D, Malcarne VL, Sauve M, van den Ende CH, Poole JL, Schouffoer AA, Welling J, Thombs BD, and the SPIN Investigators. Development and validation of the Cochin Hand Function Scale- Short Form (CHFS-6) using optimal test assembly methods: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort study. Arthritis Care Res.

 

4. Jewett LR, Kwakkenbos L, Carrier ME, Malcarne VL, Bartlett SJ, Furst DE, Gottesman K, Mayes MM, Assassi S, Harcourt D, Williamson H, Johnson SR, Körner A, Steen V, Fox RS, Gholizadeh S, Mills SD, Molnar JC, Rice DB, Thombs BD. Examination of the association of sex and race/ethnicity with appearance concerns: a Scleroderma Patient-Centered Intervention (SPIN) Cohort Study. Clin Exp Rheum.

 

5. Gumuchian ST, Peláez S, Delisle VC, Carrier ME, Jewett LR, El-Baalbaki G, Fortune C, Hudson M, Impens A, Körner A, Persmann J, Kwakkenbos L, Bartlett SJ, Thombs BD. Exploring sources of emotional distress among people living with scleroderma: a focus group study. PLOS ONE.

 

6. 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, and the SPIN Investigators. Validation of the Self-Efficacy for Managing Chronic Disease (SEMCD) Scale: A Scleroderma Patient-centered Intervention Network (SPIN) Cohort Study. Arthritis Care Res.

7. Delisle VC, Gumuchian ST, Kloda L, Boruff J, El-Baalbaki G, Körner A, Malcarne VL, Thombs BD*, Scleroderma Support Group Project Advisory Team. The effect of support group peer-facilitator training programs to improve peer-facilitator and support group member outcomes: A systematic review. BMJ Open.

8. Delisle VC, Gumuchian ST, Peláez S, Malcarne VL, El-Baalbaki G, Körner A, Hudson M, Baron M, Thombs BD. Reasons for non-participation in scleroderma support groups. Clin Exp Rheumatol.

Publications 2015

PUBLISHED PEER-REVIEWED ARTICLES 2015

 

1. Kwakkenbos L, Delisle VC, Fox RS, et al. Psychosocial aspects of scleroderma. Rheum Dis Clin N Am. 2015;41(3):519-528.​​

Publications 2013

PUBLISHED PEER-REVIEWED ARTICLES 2013

 

1.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 CHM, 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. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort: Protocol for a cohort multiple randomized controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context. BMJ Open 2013;3:e003563. 

Publications 2012

PUBLISHED PEER-REVIEWED ARTICLES 2012

 

1. Thombs BD, Jewett LR, Assassi S, Baron M, Bartlett S, Costa Maia A, El-Baalbaki G, Furst D, 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 C, Arthurs E, Bassel M, Delisle V, Milette K, Leavens A, Razykov I, Khanna D. New directions for patient-centered care in scleroderma: The Scleroderma Patient-centered Intervention Network (SPIN). Clin Exp Rheumatol.

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