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

At a glance

A study looking at the rates of mortality within patients with ALS in the United States

Affiliates

Theodore C. Larson1, Wendy Kaye2, Paul Mehta1, D. Kevin Horton1

  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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Content Source:
Agency for Toxic Substances and Disease Registry