News Release: Neuromuscular Disease Registry Helps Patients Access Research, Clinical Trials, New Genetic Tests, and Therapies
With data on more than 4,000 patients, the Canadian Neuromuscular Disease Registry celebrates a decade of facilitating research across Canada, reports the Journal of Neuromuscular Diseases
The Canadian Neuromuscular Disease Registry (CNDR) was launched in 2010 to increase efficient patient access to cutting-edge research and clinical trials, to increase understanding of the natural history and epidemiology of neuromuscular disease across Canada, and to facilitate research collaboration. An assessment of CNDR’s accomplishments, published in the Journal of Neuromuscular Diseases, found that it has been successful in securing funding and engaging the community over the past 10 years. With more than 4,000 enrolled patients, data from the registry have been used in over 125 research projects as of 2019, including clinical trial and research notifications, patient questionnaires, and data analyses around patient outcomes and care.
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Discover Neuromuscular Talent Across Canada
The NMD4C Neuromuscular Talent Pool is now live with new trainees! We invite supervisors and research groups to explore the Talent Pool to identify candidates whose skills, experience, and interests align with your work and upcoming positions. Trainees interested in being included in the Neuromuscular Talent Pool can register by completing the short form, uploading a CV and brief personal statement outlining their experience, interests, and career goals. For more information and to access the Talent Pool, please visit our website.
Join Us at the 2026 NMD4C Annual Meeting on 25 September
The 2026 NMD4C Annual Meeting will take place in Calgary on Friday, September 25, 2026. The agenda will feature a brief network update, trainee and early-career recognitions, flash talks, a health economics research showcase, and a series of cross‑disciplinary and parallel clinical/pre‑clinical discussion sessions to explore key topics, including advocacy and therapy access, strategies to sustain and strengthen pre-clinical programs, and network sustainability and strategic planning.