title: The National Registry of Veterans with amyotrophic lateral sclerosis.
abstract: BACKGROUND
  The Department of Veterans Affairs (VA) Cooperative Studies Program has established a National Registry of Veterans with Amyotrophic Lateral Sclerosis (ALS). This article describes the objectives, methods, and sample involved in the registry.
  
  
  METHODS
  United States military veterans with ALS were identified through national VA electronic medical record databases and nationwide publicity efforts for an enrollment period of 4 1/2 years. Diagnoses were confirmed by medical record reviews. Registrants were asked to participate in a DNA bank. Follow-up telephone interviews are conducted every 6 months to track participants' health status.
  
  
  RESULTS
  As of September 30, 2007, 2,400 veterans had consented to participate in the registry, 2,068 were included after medical record review, 995 were still living and actively participating, and 1,573 consented to participate in the DNA bank. 979 participants had been enrolled in the registry for at least 1 year, 497 for at least 2 years, and 205 for at least 3 years. Fourteen studies have been approved to use registry data for epidemiological, observational, and interventional protocols.
  
  
  CONCLUSIONS
  This registry has proven to be a successful model for identifying large numbers of patients with a relatively rare disease and enrolling them into multiple studies, including genetic protocols.
authors.affiliation: Epidemiology Research and Information Center, Durham VAMC, NC 27705, USA.
authors.forename: K D
authors.initials: KD
authors.lastname: Allen
authors.forename: E J
authors.initials: EJ
authors.lastname: Kasarskis
authors.forename: R S
authors.initials: RS
authors.lastname: Bedlack
authors.forename: M P
authors.initials: MP
authors.lastname: Rozear
authors.forename: J C
authors.initials: JC
authors.lastname: Morgenlander
authors.forename: A
authors.initials: A
authors.lastname: Sabet
authors.forename: L
authors.initials: L
authors.lastname: Sams
authors.forename: J H
authors.initials: JH
authors.lastname: Lindquist
authors.forename: M L
authors.initials: ML
authors.lastname: Harrelson
authors.forename: C J
authors.initials: CJ
authors.lastname: Coffman
authors.forename: E Z
authors.initials: EZ
authors.lastname: Oddone
mesh_terms: D000328:Adult; D000368:Aged; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis / Q000453:epidemiology* / Q000628:therapy; D019992:Databases as Topic / Q000458:organization & administration*; D005260:Female; D006801:Humans; D038801:International Classification of Diseases; D008297:Male; D008875:Middle Aged; D012042:Registries; D014481:United States / Q000453:epidemiology; D014728:Veterans / Q000706:statistics & numerical data*