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.