Amyotrophic lateral sclerosis estimated prevalence cases from 2022 to 2030, data from the National ALS Registry

Affiliates

Paul Mehta[1], Jaime Raymond[1], Theresa Nair[1], Moon Han[1], Jasmine Berry[1], Reshma Punjani[1], Theodore Larson[1], Suraya Mohidul[1] and D. Kevin Horton[1]

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

Journal

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

Summary

This is the first ever paper from the National ALS Registry to project the estimated prevalence rates of ALS in the United States into a future year. The Registry used capture-recapture analyses from previous years' data to estimate the prevalence retrospectively for 2022-2024 and prospectively for 2025-2030. As a result, the Registry estimates that 2022 cases of ALS in the US are close to 33,000 cases, and by 2030, these cases will rise by more than 10% to over 36,000 cases. The projected estimates reflect anticipated changes in the demographics of the United States, however, are believed to be an underestimation due to emerging therapeutics and improved healthcare possibly improving the survivability of the disease in this vulnerable population. The Registry recommends that these estimates be used to inform policy to more effectively allocate resources to ALS research and patients.

Link to Paper

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