title: Establishing a Canadian registry of patients with amyotrophic lateral sclerosis.
abstract: 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.affiliation: Department of Clinical Neurosciences, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta, T3M 1M4, Canada. korngut@gmail.com
authors.forename: L
authors.initials: L
authors.lastname: Korngut
authors.forename: A
authors.initials: A
authors.lastname: Genge
authors.forename: M
authors.initials: M
authors.lastname: Johnston
authors.forename: T
authors.initials: T
authors.lastname: Benstead
authors.forename: P
authors.initials: P
authors.lastname: Bourque
authors.forename: H
authors.initials: H
authors.lastname: Briemberg
authors.forename: A
authors.initials: A
authors.lastname: Casey
authors.forename: M
authors.initials: M
authors.lastname: D'Amour
authors.forename: N
authors.initials: N
authors.lastname: Dupré
authors.forename: D
authors.initials: D
authors.lastname: Figlewicz
authors.forename: W
authors.initials: W
authors.lastname: Hader
authors.forename: W
authors.initials: W
authors.lastname: Johnston
authors.forename: S
authors.initials: S
authors.lastname: Kalra
authors.forename: M
authors.initials: M
authors.lastname: Melanson
authors.forename: C
authors.initials: C
authors.lastname: O'Connell
authors.forename: G
authors.initials: G
authors.lastname: Rouleau
authors.forename: C
authors.initials: C
authors.lastname: Shoesmith
authors.forename: J
authors.initials: J
authors.lastname: Wee
authors.forename: L
authors.initials: L
authors.lastname: Zinman
mesh_terms: D000690:Amyotrophic Lateral Sclerosis / Q000453:epidemiology*; D002170:Canada / Q000453:epidemiology; D003625:Data Collection / Q000379:methods* / Q000706:statistics & numerical data; D005260:Female; D006306:Health Surveys; D006801:Humans; D008297:Male; D009862:Online Systems; D012042:Registries / Q000592:standards* / Q000706:statistics & numerical data*