Document Detail

Establishing a canadian registry of patients with amyotrophic lateral sclerosis.
MedLine Citation:
PMID:  23250124     Owner:  NLM     Status:  In-Data-Review    
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.
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
Related Documents :
25053474 - Haematology patients and the internet - the use of on-line health information and the i...
24826894 - Prophylactic platelet transfusions in patients with blood malignancies: cost analysis o...
25128094 - Looking back, moving forward: an analysis of complaints submitted to a canadian tertiar...
10390014 - A simple audio data logger for objective assessment of snoring in the home.
17408694 - Earlier onset and shorter survival of amyotrophic lateral sclerosis in jewish patients ...
19574694 - Review of epidemiological features, microbiological diagnosis and treatment outcome of ...
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    
Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Calgary.
Export Citation:
APA/MLA Format     Download EndNote     Download BibTex
MeSH Terms

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine

Previous Document:  When Dementia is in the House: Needs Assessment Survey for Young Caregivers.
Next Document:  Nonmotor symptoms in drug-induced parkinsonism and drug-naïve Parkinson disease.