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Canadian Scleroderma Research Group

Funding:

Canadian Institutes of Health Research. Emerging Team Grant. New and emerging team: The Canadian Scleroderma Research Group. 2007 – 2012 ($895,865). Principal Investigators: Baron M, Philip A, Pope JE. Co-Investigators: Bernatsky S, Dunne JV, Fritzler MJ, Gornitsky M, Hart DA, Hudson M, Leask AC, Mort JS, Pukall CF, Raymond Y, Recklies AD, Roughley PJ, Senécal JL, Steele RJ, Thombs BD, van Eeden SF.

Canadian Institutes of Health Research. Strategic Training in Health Research Initiative. Strategic training initiative: The Canadian Scleroderma Research Group. 2007 – 2013 ($1,800,000). Principal Investigators: Baron M, Leask AC, Mort JS, Philip A, Pope JE. Co-Investigators: Hudson M, Pukall CF, Roughley PJ, Steele RJ, Thombs BD.

Project Description: Systemic sclerosis, or scleroderma, is a multi-system disorder of connective tissue characterized by thickening and fibrosis of the skin and involvement of internal organs, most commonly the gastrointestinal tract, lungs, kidneys and heart. There is no cure for scleroderma, which is associated with substantially reduced quality of life, high levels of disability, medical comorbidity and mortality. The Canadian Scleroderma Research Group (CSRG) is a consortium of rheumatologists, basic scientists, epidemiologists, psychologists, statisticians, patients, patient advocates and other major stakeholders dedicated to the field of scleroderma research. Founded in 2004 with startup funds from a CIHR Team Development grant, the CSRG has established a large, pan-Canadian, multi-center Registry to recruit patients with this rare but devastating condition and foster research in several aspects of the disease, including health-related quality of life. The CSRG has been highly successful at securing funding from various agencies, including the Canadian Institutes of Health Research and the Fonds de Recherche en Santé du Québec. The CSRG has now collected information on over 1,200 patients from across Canada, including over 2,000 biological, clinical, and psychosocial variables. Research that is conducted by Dr. Thombs and his group as part of the CSRG involves the (1) development and evaluation of assessment tools for patient-reported outcomes, including fatigue, pain, body image distress, and depression; (2) assessment of potential causal and maintaining factors; (3) determination of trajectories and predictors of change over the course of the disease; and (4) the development and testing of behavioural interventions to reduce distress and increase overall well-being.

Publications (Trainees in bold and underlined):

Razykov I, Ziegelstein RC, Whooley MA, Thombs BD. The PHQ-9 versus the PHQ-8 – Is Item 9 useful for assessing suicide risk in coronary artery disease patients? Data from the Heart and Soul Study. Journal of Psychosomatic Research. In Press. [Impact Factor = 3.3]. 

Bassel M, Hudson M, Baron M, Taillefer SS, Mouthon L, Poiraudeau S, Poole JL, Thombs BD. Physical and occupational therapy referall and use among systemic sclerosis patients with impaired hand function: Results from a Canadian national survey. Clinical and Experimental Rheumatology. In Press. [Impact Factor = 2.1].

Harel D, Thombs BD, Hudson M, Baron M, Canadian Scleroderma Research Group, Steele R. Measuring fatigue in systemic sclerosis: A comparison of the SF-36 Vitality subscale and FACIT fatigue scale. Rheumatology. In Press. [Impact Factor = 4.4].

Leavens A, Patten S, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. Influence of somatic symptoms on PHQ-9 depression scores among patients with systemic sclerosis compared to a healthy general population sample. Arthritis Care & Research. In Press. [Impact Factor = 4.9].  

Jewett LR, Hudson M, Baron M, Malcarne V, Thombs BD, Canadian Scleroderma Research Group. Sociodemographic and disease correlates of body image distress among patients with systemic sclerosis. Under review.

Levis B, Hudson M, Knafo R, Baron M, Nielson WR, Hill M, Thombs BD, Canadian Scleroderma Research Group. Sexual activity and impairment among women with systemic sclerosis. Arthritis Care & Research. [Impact Factor = 4.7]. In Press.

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). Clinical and Experimental Rheumatology. [Impact Factor = 2.4] In Press

El-Baalbaki G, Lober J, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. A comparison of the McGill Pain Questionnaire and single-item pain measures in systemic sclerosis. Journal of Rheumatology. 2011;38(2):2581-2587. [Impact Factor = 3.6]

Milette K, Razykov I, Pope J, Hudson M, Baron M, Thombs BD. Clinical correlates of sleep problems in systemic sclerosis. Rheumatology. 2011;50(5):921-925. [Impact Factor = 4.2]

Bassel M, Hudson M, Taillefer S, Schieir O, Baron M, Thombs BD. Frequency and impact of symptoms experienced by patients with systemic sclerosis: Results from a Canadian national survey. Rheumatology. 2011;50(4):762-767. [Impact Factor = 4.2]

Newton E, Thombs BD, Groleau D. The experience of emotional distress among women with scleroderma. Qualitative Health Research. In Press. [Impact Factor = 2.2].

Jewett LR, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. Correlates of body image dissatisfaction and social discomfort in systemic sclerosis: A structural equation modeling approach. Under review.

El-Baalbaki G, Lober J, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. A comparison of the McGill Pain Questionnaire and single-item pain measures in systemic sclerosis. Under review.

Jewett LR, Haythornthwaite J, Thombs BD. Psychosocial issues and care for patients with scleroderma. In Varga J, Denton CP, Wigley FM (eds.). Scleroderma: From pathogenesis to comprehensive management. Chicago: Springer. In press.

Jewett LR, Hudson M, Thombs BD. A 38-year-old woman with elevated muscle enzymes, Raynaud’s phenomenon and positive anti-topoisomerase I antibody: Is she depressed? In Silver RM, Denton CP (eds.), Case studies in systemic sclerosis. Chicago: Springer. In press.

Knafo R, Haythorthwaite JA, Heinberg L, Wigley F, Thombs BD. The association of body image distress and pain with sexual impairment in women with systemic sclerosis. Rheumatology. In press. [Impact Factor = 4.2]. (click here for abstract)

Milette K, Razykov I, Pope J, Hudson M, Baron M, Thombs BD. Clinical correlates of sleep problems in systemic sclerosis. Rheumatology. In press. [Impact Factor = 4.2] (click here for abstract)

Bassel M, Hudson M, Taillefer S, Schieir O, Baron M, Thombs BD. Frequency and impact of symptoms experienced by patients with systemic sclerosis: Results from a Canadian national survey. Rheumatology. In press. [Impact Factor = 4.2]. (click here for abstract)

Jewett LR, Hudson M, Haythornthwaite JA, Heinberg L, Wigley F, Baron M, Thombs BD, Canadian Scleroderma Research Group. Development and validation of the Brief-Satisfaction with Appearance Scale (Brief-SWAP) for systemic sclerosis. Arthritis Care & Research. 2010;62(12):1779-1786. [Impact Factor = 4.2]. (click here for abstract)

Hudson M, Impens A, Baron M, Thombs BD, Walker JG, Steele R, Canadian Scleroderma Research Group. Discordance between patient and physician assessments of disease severity in systemic sclerosis. Journal of Rheumatology. 2010;37(11):2307-2312. [Impact Factor = 3.9]. (click here for abstract)

El-Baalbaki G, Razykov I, Hudson M, Bassel M, Baron M, Thombs BD, Canadian Scleroderma Research Group. The association of pruritus with quality of life and disability in systemic sclerosis. Arthritis Care & Research. 2010;62(10):1489-1495. [Impact Factor = 4.2]. (click here for abstract)

Thombs BD, van Lankveld W, Bassel M, Baron M, Buzza R, Haslam S, Haythornthwaite JA, Hudson M, Jewett LR, Knafo R, Kwakkenbos L, Malcarne V, Milette K, Motivala S, Newton EG, Nielson W, Pacy M, Razykov I, Schieir O, Worron-Sauve M, Taillefer S. Psychological health and well-being in systemic sclerosis: State of the science and consensus research agenda. Arthritis Care & Research. 2010;62(8):1181-1189. [Impact Factor = 4.2]. (click here for abstract)

Milette K, Hudson M, Baron M, Thombs BD, Canadian Scleroderma Research Group. Comparison of the PHQ-9 and CES-D depression scales in systemic sclerosis: Internal consistency reliability, convergent validity, and clinical correlates. Rheumatology. 2010;49(4):789-796. [Impact Factor = 4.2]. (click here for abstract)

Schieir O, Thombs BD, Hudson M, Boivin JF, Steele R, Bernatsky S, Hanley J, Baron M, Canadian Scleroderma Research Group. Prevalence, severity, and clinical correlates of pain in patients with systemic sclerosis. Arthritis Care & Research. 2010;62(3):409-417. [Impact Factor = 4.2]. (click here for abstract)

Knafo R, Jewett LR, Bassel M, Thombs BD. Sexual function in women with systemic sclerosis: A comment on Schouffoer et al. Arthritis Care & Research. 2010;62(8):1200. [Impact Factor = 4.2]. (click here for abstract)

Razykov I, Thombs BD, Hudson M, Bassel M, Baron M, Canadian Scleroderma Research Group. Prevalence and clinical correlates of pruritus in patients with systemic sclerosis. Arthritis & Rheumatism (Arthritis Care & Research). 2009;61(12):1765-1770. [Impact Factor = 4.2]. (click here for abstract)

Hudson M, Steele R, Lu Y, Thombs BD, Schieir O, Baron M, Canadian Scleroderma Research Group. Work disability in systemic sclerosis. Journal of Rheumatology. 2009;36(11):2481-2486. [Impact Factor = 3.9]. 

Knafo R, Thombs BD, Jewett LR, Hudson M, Wigley F, Haythornthwaite JA. (Not) talking about sex. A systematic comparison of sexual impairment in women with systematic sclerosis and other chronic disease samples. Rheumatology. 2009;48(10):1300-1303. [Impact Factor = 4.2]. (click here for abstract)

Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Baron M, Canadian Scleroderma Research Group. Health-related quality of life in systemic sclerosis: A systematic review. Arthritis & Rheumatism (Arthritis Care & Research). 2009;61(8):1112-1120. [Impact Factor = 4.2]. (click here for abstract)

Thombs BD, Hudson M, Bassel M, Taillefer SS, Baron M, Canadian Scleroderma Research Group. Sociodemographic, disease, and symptom correlates of fatigue in systemic sclerosis. Arthritis & Rheumatism (Arthritis Care & Research). 2009;61(7):966-973. [Impact Factor = 4.2].

Hudson M, Steele R, Lu Y, Thombs BD, Panopalis P, Baron M, Canadian Scleroderma Research Group. Clinical correlates of self-reported physical health status in systemic sclerosis. Journal of Rheumatology. 2009;36(6):1226-1229. [Impact Factor = 3.3]. (click here for abstract)

Hudson M, Thombs BD, Steele R, Panopalis P, Newton E, Canadian Scleroderma Research Group, Baron M. Quality of life in systemic sclerosis compared to the general population and patients with other chronic conditions. Journal of Rheumatology. 2009;36(4):768-772. [Impact Factor = 3.3]. (click here for abstract)

Schieir O, Thombs BD, Berkson L, Couture F, Fitzcharles MA, Gagné M, Garfield B, Gutkowski A, Hudson M, Kang H, Kapusta M, Ligier S, Mathieu J-P, Ménard H, Starr M, Stein M, Zummer M, Baron M. Symptoms of depression predict trajectory of pain among patients with early inflammatory arthritis: A path analysis approach to assessing pain. Journal of Rheumatology. 2009;36(2):231-239. [Impact Factor = 3.3]. (click here for abstract)

Hudson M, Thombs BD, Baron M, Canadian Scleroderma Research Group. Time to diagnosis in systemic sclerosis: Is gender a factor? Arthritis & Rheumatism (Arthritis Care & Research). 2009;61(2):274-278. [Impact Factor = 6.8]. 

Thombs BD, Bassel M, McGuire L, Smith MT, Hudson M, Haythornthwaite JA. A systematic comparison of fatigue levels in systemic sclerosis with general population, cancer, and rheumatic disease samples. Rheumatology. 2008;47(10):1559-1563. [Impact Factor = 4.1]. (click here for abstract)

Baron M, Sutton E, Hudson M, Thombs BD, Markland J, Pope J, Robinson D, Jones N, Docherty P, Abu-Hakima M, LeClercq S, Smith D, Mathieu J-P. The relationship of dyspnea to function and quality of life in systemic sclerosis. Annals of the Rheumatic Diseases. 2008;67(5):644-650. [Impact Factor = 6.4]. (click here for abstract)

Thombs BD, Hudson M, Taillefer SS, Baron M, Canadian Scleroderma Research Group. Prevalence and clinical correlates of symptoms of depression in patients with systemic sclerosis. Arthritis & Rheumatism (Arthritis Care & Research). 2008;59(4):504-509. [Impact Factor = 7.7]. (click here for abstract)

Thombs BD, Hudson M, Schieir O, Taillefer SS, Baron M, Canadian Scleroderma Research Group. Reliability and validity of the Center for Epidemiological Studies Depression Scale in patients with systemic sclerosis. Arthritis & Rheumatism (Arthritis Care & Research). 2008;59(3):438-443. [Impact Factor = 7.7]. (click here for abstract)

Thombs BD, Fuss S, Hudson M, Schieir O, Taillefer SS, Fogel J, Ford DE, Baron M, Canadian Scleroderma Research Group. High rates of depressive symptoms among patients with systemic sclerosis are not explained by differential reporting of somatic symptoms. Arthritis & Rheumatism (Arthritis Care & Research). 2008;59(3):431-437. [Impact Factor = 7.7]. (click here for abstract)

Hudson M, Thombs BD, Steele R, Watte R, Taillefer S, Canadian Scleroderma Research Group, Baron M. Clinical correlates of quality of life in systemic sclerosis measured with the World Health Organization Disease Assessment Schedule II. Arthritis & Rheumatism (Arthritis Care & Research). 2008;59(2):279-284. [Impact Factor = 7.7]. (click here for abstract)

Thombs BD, Taillefer SS, Hudson M, Baron M. Depression in patients with scleroderma. A systematic review of the evidence. Arthritis & Rheumatism (Arthritis Care & Research). 2007;57(6):1089-1097. [Impact Factor = 7.8]. (click here for abstract)

Hudson M, Thombs B, Baron M. Are the SF-36 physical and mental component scores useful measures in patients with systemic sclerosis? Arthritis & Rheumatism (Arthritis Care & Research). 2007;57(7):1339. [Impact Factor = 7.7]. (click here for abstract)