By Megan Smith
A new national registry for patients with neuromuscular disease launched in several Canadian cities June 9. The registry 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 Faculty of Medicine and a member of the Hotchkiss Brain Institute.
The Canadian Neuromuscular Disease Registry (CNDR) includes 17 clinics across Canada located in Vancouver, Calgary, Edmonton, Ottawa, Toronto, London, Kingston, Montreal and Halifax.
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 (amyotrophic lateral sclerosis) is the most prominent of these diseases in adults, and DMD (Duchenne muscular dystrophy) is the most common pediatric muscular dystrophy.
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 these 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.
“We are very supportive of the registry. It is one more piece in the puzzle that will help us find a cure for this devastating disease," says ALS Canada CEO David Cameron.
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. More information is available on the CNDR’s website www.cndr.org.