Victoria Hodgkinson

Victoria Hodgkinson

Investigator

Executive Director, Canadian Neuromuscular Disease Registry


NMD4C Involvement: Pillar 2: Clinical Research, Pillar 3: Clinical Practice Research, Theme 5: Open Science

Email Victoria

LinkedIn profile

Biography

Dr. Hodgkinson is the Executive Director of the Canadian Neuromuscular Disease Registry, where she oversees the scientific management and coordination of national patient registries in neuromuscular disease. Her work involves management of the registry network, development and review of registry datasets, and research project design and scientific analyses. She is actively engaged in global collaborative projects to share data for common purposes, improve registry design and utility worldwide, and also acts as co-chair of the global TREAT-NMD SMA Registries group. Through this work she is involved in consensus building within Canada and globally. Before joining the CNDR, Victoria worked in business development with Innovate Calgary and the University of Calgary helping facilitate research partnerships between not-for-profits, industry, and academics.
Dr. Hodgkinson received her BA in Biology from Cornell University (NY, USA), and her Ph.D. in Biochemistry from the University of Missouri (MO, USA), where her work work focused on copper homeostasis in the central and peripheral nervous systems. Following her Ph.D. Victoria completed postdoctoral training in electrophysiology and calcium channel regulation at the University of Calgary. Throughout her training in both the US and Canada, Victoria also taught undergraduate and graduate level courses in biochemistry, cell biology, advanced microscopy, health research literacy, and epidemiology.


Recent Publications

Deltour, N, Lee, SY, Garry, EM, Gibbs, LR, McElwee, S, Sajedian, RM et al.. Use of European registries to characterise the changing landscape of disease progression and treatment of spinal muscular atrophy (SMA): opportunities, pitfalls and challenges. Orphanet J Rare Dis. 2026.21 (1) PMID:42983461

Munn, JS, Cohen, E, Hodgkinson, V, Lochmüller, H, Osman, H, Jewett, G et al.. Advancing neuromuscular disease research through real-world data: Challenges and lessons learned. J Neuromuscul Dis. 2026.13 (6)1564-1566 PMID:42261210

Mitha, A, Hodgkinson, V, Vander Wyk, S, Cameron, C, Wills, A. Could an outcome-based agreement be operationalized using real-world data from the Canadian Neuromuscular Disease Registry? Perspectives from an expert-led assessment in spinal muscular atrophy. Ther Adv Rare Dis. 2026.7 26330040261433035 PMID:41909218

Gauvreau, G, Behlim, T, Ng, P, Hodgkinson, V, Selby, K, Mah, JK et al.. Respiratory and Bulbar Support in Spinal Muscular Atrophy Type I Treated with Nusinersen. Can J Neurol Sci. 2025. 1-8 PMID:40357918

O'Connell, C, Rodrigue, X, Hodgkinson, V, Henley, K, Slayter, J, Aleman, A et al.. Thinking outside the box: A re-evaluation of Canadian recommended outcome measures in adult spinal muscular atrophy - report of a national consensus workshop. J Neuromuscul Dis. 2025.12 (5)699-710 PMID:40356341

See more on PubMed