Canadian Neuromuscular Disease Registry (CNDR)

The Canadian Neuromuscular Disease Registry (CNDR) is a database to connect people living with neuromuscular diseases across Canada with researchers looking to recruit for clinical trials. In addition, it can provide some information about the population of those living with ALS in Canada and help to improve an equal standard of care across the country. Essentially, the database documents information (medical and non-medical) from people diagnosed with ALS so it can be used to better understand the disease and improve our ability to treat it. It is a very simple, cost-free way to contribute to research.

ALS Canada has supported the ALS component of the CNDR since its inception and it is now being used as a tool to facilitate recruitment of clients for clinical laboratory research studies and at least two upcoming clinical trials in Canada.

In addition, the registry will likely be even more important for Canadians living with ALS in the future as treatments may become tailored for specific individuals. With a better understanding of the disease, it is becoming apparent that some treatments may work better in certain individuals than others and new clinical trials will be employing biomarkers to determine who gets access to a therapy and to monitor if there is benefit. Biomarkers are simply measurements your physician can do to see if you are suited to a particular trial or if the experimental therapeutic is working as we think it should. An example of a biomarker could be measuring levels of things in your blood.

A theoretical example: if a new drug seems to slow progression of ALS by reducing a particular factor that we can measure in a routine blood test (a biomarker), individuals with ALS and high level of that factor might be recruited to a clinical trial of that new drug and signing up to the CNDR will allow those people who might best benefit to be found easily.

Anyone across Canada who has been diagnosed with a neuromuscular disease is able to join the registry. Patients living outside the cities with affiliated clinics, or those not currently seeing a neuromuscular specialist, can register by contacting the CNDR National Office at the University of Calgary at 1-877-401-4494.

For more information about the registry please visit www.cndr.org