Incidence of amyotrophic lateral sclerosis (ALS) may hover around 1.6 cases per 100,000 population, according to new research from Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration.

The United States National ALS Registry was launched in October 2010 to improve analysis of the incidence, prevalence and risk factors of the disease, which is not reportable to any state health authority besides Massachusetts. The registry has published national prevalence estimates from 2010 to 2016 and analysis of specific state and metropolitan areas. The current study presents the first national estimates of incidence rates and case counts from 2014 through 2016 in administrative and self-reported databases.

Researchers collected the data from the Centers for Medicare and Medicaid Services, Veteran Health Administration, and Veteran Benefits Administration for those years and the ALS Registry’s online self-enrollment system. They eliminated duplications and cross-referenced cases with prior years’ data.


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They found 5695 ALS cases in adults in 2014, 6045 in 2015, and 4861 in 2016. Age-adjusted incidence rates per 100,000 people decreased from 1.75 in 2014 to 1.6 in 2015 and 2016. Across the years, men had higher incidence rates compared with women. ALS was more common among White individuals compared with Black individuals and individuals classified as “other.” ALS was most common among the 60 to 69 age group and the 70 to 79 age group (age adjusted 30.6-34.3 and 27.6-33.7, respectively, per 100,000). The lowest incidence rates were among young adults (18-39 years, 1.6-1.9 age-adjusted rates per 100,000).

Individuals in the Midwest were more likely to have ALS compared with other regions of the US. The South had the lowest incidence rate.

Study limitations include possible under ascertainment or undetected duplication of cases.

“Since this is the first-time incidence has been reported nationally, additional years of data are needed to reliably detect trends,” the researchers said. “The limited data presented here suggest the incidence of ALS in the United States may be steady between 1.5 and 1.7 per 100,000 population.”

Reference

Mehta P, Raymond J, Punjani R, et al. Incidence of amyotrophic lateral sclerosis in the United States, 2014–2016. Amyotrophic Lateral Sclerosis and Frontemporal Degeneration. Published online January 13, 2022. doi:10.1080/21678421.2021.2023190