Families of SMA Canada is proud to have offered major support to the Canadian Neuromuscular Disease Registry in support of SMA registration. This registration will make a substantial impact on standardizing care for SMA across Canada. It will also help initiate the offer of clinical trials in Canada as well as supplying information to clinicians, physicians and families. A very exciting road ahead for us all!!
Canadian Neuromuscular Disease Registry (CNDR) and SMA (2012)
In January 2012, the Canadian Neuromuscular Disease Registry (CNDR) was the recipient of $100,000 in funding from Families of SMA Canada. This funding would be utilized over the next two years to allow the CNDR to add Spinal Muscular Atrophy to the list of diseases on which it collects detailed medical information from patients across Canada.
The $35,000 allocated for the 2012 – 2013 fiscal year is helping the registry to accomplish the following:
- Organize leading Canadian experts in Spinal Muscular Atrophy clinical care and scientific research to review and formulate a dataset to be collected by the registry. These experts will meet in Ottawa on October 11, 2012 to derive the dataset. The dataset will also align with international datasets such as the dataset developed by TREAT-NMD (Translational Research in Europe for the Assessment and Treatment of Neuromuscular Diseases).
- Facilitate the development of the database data collection module including the integration of a new, faster and more efficient data collection technology using electronic pens in the CNDR’s affiliated clinics. This database module will be deployed in early 2013.
Individuals with Spinal Muscular Atrophy can join the CNDR currently by supplying their diagnosis and basic demographic information (name, age, gender, and contact details such as address and phone number). To date the CNDR has recruited 46 patients with Spinal Muscular Atrophy representing 4% of the total registry enrollees to date. In 2013, as the data collection module is deployed and Year 2 funding is available, a stronger emphasis will be placed on clinical recruitment of patients with Spinal Muscular Atrophy in the 21 neuromuscular clinics in 6 provinces participating in the registry. The CNDR also enrolls patients not attending a participating neuromuscular clinic through its National Office at the University of Calgary.
For more information or to register please contact the CNDR National Office at 1-877-401-4494 or via email at email@example.com. To stay in touch with the registry consider signing up to receive our newsletter by visiting www.cndr.org/news.cfm