In June 2011, a new national registry (The Canadian Neuromuscular Disease Registry (CNDR) for patients with neuromuscular disease will help patients connect with researchers to participate in clinical research that will benefit patients by offering possible new therapies, treatments and understanding of their disease.
“This is a tremendous opportunity for patients, healthcare professionals, and researchers, to connect and improve research into neuromuscular diseases across Canada” says Dr. Lawrence Korngut the national principal investigator from the University of Calgary’s Faculty of Medicine, and a member of the Hotchkiss Brain Institute.
The CNDR is a Canada-wide database of patients who have been diagnosed with a neuromuscular disease. The term “neuromuscular disease” refers to a group of more than 40 diseases that affect how muscles and nerves work. ALS is the most prominent of these diseases in adults, and and Duchenne muscular dystrophy (DMD) is the most common pediatric muscular dystrophy.
The Canadian Neuromuscular Disease Registry (CNDR) includes 17 clinics across Canada located in Vancouver, Calgary, Edmonton, Ottawa, Toronto, London, Kingston, Montreal and Halifax
The Registry is the only means by which valid national epidemiologic data about ALS can be obtained.
Patients with neuromuscular disease will benefit from this new national registry. Shelagh Mikulak has ALS and joined the registry because it gives her hope that “with the information available to researchers there will be a significant increase in the number of studies leading to discovering the cause, treatment and cure of ALS”.
Finding treatments for neuromuscular diseases has been challenging, as patients are scattered
across the country. This registry will allow doctors and researchers to look at medical data from large groups of patients helping them to find better ways to manage each disease.
All patients both adults and children across Canada who have been diagnosed with a neuromuscular disease are 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.
The CNDR is supported by the ALS Society of Canada, Jesse’s Journey and the Marigold Foundation.
For more information about the registry please visit www.cndr.org.