The ALS Registry currently being supported by ALS Canada is the only means by which valid national epidemiologic data about ALS can be obtained.  The CNDR was established at the University of Calgary in the fall of 2009 for muscular dystrophies, and subsequently ALS has been added as an index disease.  During the past year, the ALS clinicians from centres across Canada have worked together to establish the critical data set which will serve as the baseline for patient information entry.  ALS patients have been entered in the Registry since June 2011.

The ALS Registry will need sponsorship on an annual basis, as longterm sustainability is key to the success of any disease registry.  ALS Canada has agreed to sponsor the Registry for the first three years.  However there is opportunity for immediate sponsorship by other parties.  The most fundamental data about incidence, prevalence, age at onset, military service, family history/genetics, environmental or lifestyle exposures, survival after onset, etc will have value to those working with federal and provincial health care planners.  It would also be of value for sponsors whose products are aimed at treating ALS symptoms, or providing support along the lines of assistive devices.

For more information contact:
Denise A. Figlewicz, PhD
Vice-President Research
ALS Society of Canada
3000 Steeles Avenue East, Suite 200
Markham, Ontario L3R 4T9
Toll Free: 1-800-267-4257 | ext. 202 | daf@als.ca