Establishing a Canadian registry of patients with amyotrophic lateral sclerosis.

TitleEstablishing a Canadian registry of patients with amyotrophic lateral sclerosis.
Publication TypeJournal Article
Year of Publication2013
AuthorsKorngut L, Genge A, Johnston M, Benstead T, Bourque P, Briemberg H, Casey A, D'Amour M, Dupré N, Figlewicz D, Hader W, Johnston W, Kalra S, Melanson M, O'Connell C, Rouleau G, Shoesmith C, Wee J, Zinman L
JournalThe Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques
Volume40
Issue1
Pagination29-35
Date Published2013 Jan
Abstract

Amyotrophic lateral sclerosis (ALS) is a devastating cause of progressive weakness, respiratory failure and death. To date there is no effective therapy to meaningfully extend survival but continuously emerging targets and putative treatments are studied in clinical trials. Canadian epidemiological data on ALS is scarce and the socioeconomic impact of ALS on Canadian society is unclear. The Canadian Neuromuscular Disease Registry (CNDR) is a national clinic-based registry of patients with neuromuscular diseases with the goal of facilitating the design and execution of clinical research.

DOI10.1016/j.maturitas.2013.03.002
Alternate JournalCan J Neurol Sci