A new national registry for patients with neuromuscular disease will launch in several Canadian cities tomorrow, June 9th. 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 University of Calgary’s 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. Dr. Angela Genge, Medical Director of the Clinical Research Unit and Director of both the ALS Clinic and Pain Clinic at The Montreal Neurological Institute and Hospital, McGill University, will be coordinating the registry for adult patients in Montreal.
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.
The CNDR is supported by the ALS Society of Canada, Jesse’s Journey and the Marigold Foundation.
- Amyotrophic lateral sclerosis (also known as Lou Gehrig's disease) is a fatal neurodegenerative disease.
- People living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord.
- 80 % of people with ALS die within two to five years of diagnosis– unable to breathe or swallow. Ten per cent of those affected may live for 10 years or longer.
- Approximately 2500 – 3000 Canadians over the age of 18 currently live with ALS.
- Every day two or three Canadians die of ALS.
- Duchenne muscular dystrophy (DMD) is a fatal genetic disorder that gradually weakens the body's muscles.
- There are different types of muscular dystrophy: Duchenne is both the most common and the most severe form of the disease, affecting 1 in every 3,500 boys.
- Most kids with DMD are using a wheelchair by the time they are 12.