Canadian Neuromuscular Disease Registry (CNDR)

The Canadian Neuromuscular Disease Registry (CNDR) is a nationwide registry of people diagnosed with neuromuscular diseases. It collects important medical information from patients across the country to improve understanding of neuromuscular disease, facilitate research collaborations, and accelerate the development of new therapies.

From 2011 to 2014, ALS Canada provided initial support to build the foundation of a national registry for ALS housed in the CNDR. The registry was designed to learn more about the clinical aspects of Canadians living with ALS and the care they receive.

Learn more about CNDR
Logo for the Canadian Neuromuscular Disease Registry (CNDR)

Impact

Since its inception, the CNDR has recruited over 1500 people living with ALS.

Data collected has resulted in several important manuscripts highlighting the Canadian ALS landscape, including a measurement of time to diagnosis published in 2018*[1], that supported the need for the ReferALS initiative.

Learn about ReferALS

Today, the CNDR has become a valuable source of collecting real-world evidence data for newly approved ALS treatments in Canada, solidifying it as a critical part of the Canadian ALS ecosystem. This registry, alongside the Canadian ALS Best Practice Recommendations, works towards a standard of care for people living with ALS across the country.

View Canadian Best Practice Recommendations
[1] Provincial Differences in the Diagnosis and Care of Amyotrophic Lateral Sclerosis https://pubmed.ncbi.nlm.nih.gov/30430962/

Published CNDR ALS studies

Provincial differences in the diagnosis and treatment of ALS patients in Canada

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Nutritional Management in ALS

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Establishing a Canadian ALS Registry

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Does the index-to-ring finger length ratio differ in ALS?

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