Canadian Neuromuscular Disease Registry (CNDR)

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.

Anyone living with ALS can participate and share information that may help advance future ALS research.

To register online, please visit this link. If you see your clinic listed and would prefer to register through your clinic instead, you can speak with a staff member at your next visit. If you are not registering through an ALS clinic, please make sure you select “No, I am self-registering” when asked if you are registering through a clinic.

Please contact the CNDR team with any questions.

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.

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.