NMD4C Knowledge Translation Coordinator
Scleroderma Patient-centered Intervention Network (SPIN) | Lady Davis Institute for Medical Research, Jewish General Hospital
NMD4C Working Group(s): Knowledge TranslationEmail Julia
Education and Experience
Julia graduated from McGill University in 2018 with a Master of Science in Biology with a concentration in Conservation, Ecology, Evolution and Behaviour. Her thesis focused on species distribution modelling of small mammal hosts of Lyme disease in North America. She then worked with the Canadian Task Force on Preventive Health Care (CTFPHC) as the administrator and research assistant from 2019-2021. She was the main liaison between the Task Force leadership, and collaborators at the Public Health Agency of Canada (PHAC) and the Evidence Review and Synthesis Centers. To facilitate and expedite the development of 6 national CPGs, she oversaw the stakeholder management for the review process of guideline documents, particularly in the recruitment of stakeholders (including disease specific organizations, federal and provincial organization, peer reviewers and clinical experts).
Scleroderma Patient-Centered Intervention Network
In early 2021, Julia joined the Scleroderma Patient-Centered Intervention Network (SPIN) as the clinical research coordinator. SPIN is a large multinational cohort with over 1400 patients with systemic sclerosis (scleroderma; a rare autoimmune rheumatic disease) from 47 centers in 7 countries. Julia coordinates all stages of SPIN’s randomized controlled trials (RCTs), including the SPIN Self-Management (SPIN-SELF) trial, testing an online educational toolkit to help scleroderma patients develop self-management skills, to help them address their chronic physical and mental health symptoms.
NMD4C Role as Knowledge Translation Coordinator
Within the NMD4C, Julia will support the Knowledge Translation Working Group as the knowledge translation coordinator.
Rapoport, C, Choi, AK, Kwakkenbos, L, Carrier, ME, Henry, RS, Mouthon, L et al.. 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 (Hoboken). 2023. PMID:36938696
Wurz, A, Duchek, D, Ellis, K, Bansal, M, Carrier, ME, Tao, L et al.. 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. 2023. 1-13 PMID:36708187
Kwakkenbos, L, Carrier, ME, Welling, J, Levis, B, Levis, AW, Sauve, M et al.. 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. 2022.23 (1)994 PMID:36510233
Thombs, BD, Levis, B, Carrier, ME, Dyas, L, Nordlund, J, Tao, L et al.. 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 (1)396 PMID:36307891
Kwakkenbos, L, Østbø, N, Carrier, ME, Nielson, WR, Fedoruk, C, Levis, B et al.. Randomized feasibility trial of the Scleroderma Patient-centered Intervention Network Self-Management (SPIN-SELF) Program. Pilot Feasibility Stud. 2022.8 (1)45 PMID:35219340
Gordon, JK, Showalter, K, Wu, Y, Kwakkenbos, L, Carrier, ME, Henry, RS et al.. Systemic sclerosis and COVID-19 vaccines: a SPIN Cohort study. Lancet Rheumatol. 2022.4 (4)e243-e246 PMID:35072109
Nordlund, J, Henry, RS, Kwakkenbos, L, Carrier, ME, Levis, B, Nielson, WR et al.. 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 (1)856 PMID:34838105
Thombs, BD, Kwakkenbos, L, Levis, B, Bourgeault, A, Henry, RS, Levis, AW et al.. Effects of a multi-faceted education and support programme on anxiety symptoms among people with systemic sclerosis and anxiety during COVID-19 (SPIN-CHAT): a two-arm parallel, partially nested, randomised, controlled trial. Lancet Rheumatol. 2021.3 (6)e427-e437 PMID:33899008
Wu, Y, Kwakkenbos, L, Henry, RS, Carrier, ME, Gagarine, M, Harb, S et al.. 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 PMID:33271402
Thombs, BD, Kwakkenbos, L, Henry, RS, Carrier, ME, Patten, S, Harb, S et al.. 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 PMID:33070043See more on PubMed