State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance

Laurie Wagner, Lindsay Rechtman, Heather Jordan, Maggie Ritsick, Marchelle Sanchez, Eric Sorenson, Wendy Kaye

Research output: Contribution to journalArticlepeer-review

14 Scopus citations


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. population. 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.

Original languageEnglish (US)
Pages (from-to)128-134
Number of pages7
JournalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Issue number1-2
StatePublished - Feb 17 2016


  • ALS surveillance
  • Amyotrophic lateral sclerosis (ALS)
  • epidemiology
  • incidence
  • prevalence

ASJC Scopus subject areas

  • Neurology
  • Clinical Neurology


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