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Canadian Neuromuscular Disease Registry increases patient access to research, clinical trials
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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IMAGE: CNDR Projects: Total projects completed by the CNDR is shown by the line graph (right axis). Type of projects completed per year are shown by bar graph (left axis). view more
Credit: V. Hodgkinson et al./The Canadian Neuromuscular Disease Registry 2010-2019.
Amsterdam, February 2, 2021 - 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, pat