Background: Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neuromuscular disease with no known cure. Like many non-communicable conditions, ALS is not a notifiable disease in the United States (U.S.) and the ascertainment of prevalent ALS cases continues to be a challenge to accurately quantify. To overcome this, the National ALS Registry (Registry) uses novel methods such as capture-recapture (CRC) to help determine newly diagnosed and existing cases in the U.S. As pharmaceutical drug companies continue to explore therapeutics for effective treatments to extend the life for these patients, the number of ALS patients living with this disease is likely to grow extensively.
Objective: To estimate the projected number of prevalent ALS cases in the U.S. from 2022 to 2030.
Methods: We estimated ALS prevalence retrospectively from 2022-2024 and prospectively from 2025-2030 by applying CRC methods on 2018 Registry data (the most current data available) to generate observed, missing, and total cases, and by using Census estimates of future U.S. populations. Projected prevalent cases were stratified by age, race, and sex and applied to national disease estimates.
Results: The number of estimated cases in 2022 was 32,893. The projected number of ALS cases increases over 10% to 36,308 by 2030. The largest increase occurs for the aging population ≥66 with a 25% increase from 16,349 ALS cases in 2022 to 20,438 cases by 2030. The projected number of ALS cases classified as other race increased by 15% (2,473 cases in 2022 to 2,854 cases in 2030).
Discussion: These estimates of projected ALS cases reflect anticipated changes in the underlying demographics of the U.S. These prevalence projections are likely an underestimation because emerging therapeutics and improved healthcare will improve survivability in this vulnerable population. These results can be used to inform policy to more efficiently allocate resources for ALS patients and programs.