Prevalence of amyotrophic lateral sclerosis in the United States, 2018

Affiliates Paul Mehta [1], Jaime Raymond [1], Yuzi Zhang [2], Reshma Punjani [1], Moon Han [2], Theodore Larson [1], Oleg Muravov [1], Robert H Lyles [2], D Kevin Horton [1]


[1] Office of Innovation and Analytics, National ALS Registry, Agency for Toxic Substances and Disease Registry/Centers for Disease Control and Prevention, Atlanta, GA, USA and.

[2] Department of Biostatistics and Bioinformatics, Rollins School of Public Health, Emory University, Atlanta, GA, USA.

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This paper includes improved methodologies for estimating the prevalence of ALS in the United States. The National ALS Registry identified 21,655 cases of ALS in 2018, with a calculated age-adjusted prevalence at 6.6 per 100,000 persons. Using an improved capture-recapture (CRC) methodology, an estimated 29,824 cases were identified, for an adjusted prevalence of 9.1 per 100,000 US Population.

Comparisons of findings from 2017 to 2018 show improved case ascertainment, but more importantly suggest a current stabilization of ALS prevalent cases at around 30,000 per year. The Registry remains steadfast in adjusting, adapting, and improving methods to evaluate ALS cases in the United States.

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