title: State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance.
abstract: Our objective was to develop state and metropolitan area-based surveillance projects to describe the characteristics of those with ALS and to assist with evaluating the completeness of the National ALS Registry. Because the literature suggested that ethnic/racial minorities have lower incidence of ALS, three state and eight metropolitan areas were selected to over-represent ethnic/racial minorities to have a sufficient number of minority patients. Project activities relied on reports from medical providers and medical records abstraction. The project areas represented approximately 27% of the U.S.
  
  
  METHODS
  The combined racial and ethnic distribution of these areas is 64.4% white, 16.0% African-American, 6.7% Asian, and 28.3% Hispanic. Most neurologists did not diagnose or provide care for ALS patients. The number of unique patients reported was close to expected (5883 vs. 6673). Age and gender distribution of patients was similar to the literature. The crude average annual incidence rate was 1.52 per 100,000 person-years, CI 1.44-1.61, and the 2009 prevalence rate was 3.84 per 100,000 population, CI 3.70-3.97. In conclusion, this study represents the largest number of clinically diagnosed ALS patients reported by neurologists in the U.S. Comparison of these data with those in the National ALS Registry will help evaluate the completeness of administrative databases.
authors.affiliation: a McKing Consulting Corporation , Atlanta, Georgia , USA.
authors.forename: Laurie
authors.initials: L
authors.lastname: Wagner
authors.affiliation: a McKing Consulting Corporation , Atlanta, Georgia , USA.
authors.forename: Lindsay
authors.initials: L
authors.lastname: Rechtman
authors.affiliation: a McKing Consulting Corporation , Atlanta, Georgia , USA.
authors.forename: Heather
authors.initials: H
authors.lastname: Jordan
authors.affiliation: a McKing Consulting Corporation , Atlanta, Georgia , USA.
authors.forename: Maggie
authors.initials: M
authors.lastname: Ritsick
authors.affiliation: b Agency for Toxic Substances and Disease Registry , Atlanta, Georgia , USA.
authors.forename: Marchelle
authors.initials: M
authors.lastname: Sanchez
authors.affiliation: c The Mayo Clinic , Rochester, Minnesota , USA.
authors.forename: Eric
authors.initials: E
authors.lastname: Sorenson
authors.affiliation: a McKing Consulting Corporation , Atlanta, Georgia , USA.
authors.forename: Wendy
authors.initials: W
authors.lastname: Kaye
mesh_terms: D000328:Adult; D017677:Age Distribution; D000368:Aged; D000369:Aged, 80 and over; D000690:Amyotrophic Lateral Sclerosis / Q000175:diagnosis* / Q000453:epidemiology / Q000208:ethnology*; D002947:Cities / Q000453:epidemiology / Q000208:ethnology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011159:Population Surveillance / Q000379:methods*; D044469:Racial Groups / Q000208:ethnology / Q000706:statistics & numerical data*; D012042:Registries / Q000706:statistics & numerical data*; D017678:Sex Distribution; D014481:United States / Q000453:epidemiology; D014505:Urban Population / Q000706:statistics & numerical data; D055815:Young Adult
keywords: ALS surveillance; Amyotrophic lateral sclerosis (ALS); epidemiology; incidence; prevalence