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

Affiliates Laurie Wagner [1], Lindsay Rechtman [1], Heather Jordan [1], Maggie Ritsick [1], Marchelle Sanchez [2], Eric Sorenson [3] & Wendy Kaye [1]


[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.
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