Document Detail


Establishing a canadian registry of patients with amyotrophic lateral sclerosis.
MedLine Citation:
PMID:  23250124     Owner:  NLM     Status:  In-Data-Review    
Abstract/OtherAbstract:
Background: 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. Methods: We conducted a national stakeholder survey to assess interest for a Canadian ALS registry and an assessment of expected case ascertainment. A dataset derivation meeting was held to establish the registry medical dataset. Results: We report the results of the national stakeholder survey, case ascertainment assessment, and the derived dataset that have resulted in the current implementation of a Canadian registry of patients with ALS. Conclusions: The development of this long sought-after resource is a significant step forward for the Canadian ALS patient and research communities that will result in more efficient clinical trial recruitment and advancements in our understanding of ALS in Canada.
Authors:
L Korngut; A Genge; M Johnston; T Benstead; P Bourque; H Briemberg; A Casey; M D'Amour; N Dupré; D Figlewicz; W Hader; W Johnston; S Kalra; M Melanson; C O'Connell; G Rouleau; C Shoesmith; J Wee; L Zinman
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Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  The Canadian journal of neurological sciences. Le journal canadien des sciences neurologiques     Volume:  40     ISSN:  0317-1671     ISO Abbreviation:  Can J Neurol Sci     Publication Date:  2013 Jan 
Date Detail:
Created Date:  2012-12-19     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  0415227     Medline TA:  Can J Neurol Sci     Country:  Canada    
Other Details:
Languages:  eng     Pagination:  29-35     Citation Subset:  IM    
Affiliation:
Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Calgary.
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