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

At a glance

Study on clinically diagnosed ALS patients reported by neurologists to develop a state/metro based surveillance program

Affiliates

Laurie Wagner1, Lindsay Rechtman1, Heather Jordan1, Maggie Ritsick1, Marchelle Sanchez2, Eric Sorenson3 & Wendy Kaye1

  1. McKing Consulting Corporation
  2. Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Sciences
  3. The Mayo Clinic

Journal

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Summary

This study represents the largest number of clinically diagnosed ALS patients reported by neurologists in the US; the project area covers 27% of the U.S. population. The aim of the project 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 ALS Registry. 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.

Link to paper

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Content Source:
Agency for Toxic Substances and Disease Registry