Amyotrophic lateral sclerosis mortality in the United States, 2011-2014

Affiliates Theodore C. Larson [1], Wendy Kaye [2], Paul Mehta [1], D. Kevin Horton [1]


[1] Agency for Toxic Substances and Disease Registry, Division of Toxicology and Human Health Services
[2] McKing Consulting Corporation

Journal Neuroepidemiology
Summary This study determines US mortality rates for ALS alone by excluding other motor neuron diseases coded along with ALS in ICD-10 code G12.2. It wasn’t until 2017 that there was a specific code for ALS. Approximately 21% of all deaths reported under this G12.2 code were not ALS related deaths and thus excluded. The total ALS deaths identified were 24,328, resulting in an overall age-adjusted mortality rate of 1.70 (95% CI 1.68-1.72). Previous reports of ALS mortality in the US showed similar age, sex, and race distributions but with greater age-adjusted mortality rates due to the inclusion of disease into the case definition. When using ICD-10 data collection prior to 2017, additional review of multiple-cause of death data is required for the accurate estimation of ALS deaths.
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