Prevalence of ALS in all 50 states in the United States, data from the National ALS Registry, 2011–2018

Affiliates Paul Mehta, Jaime Raymond, Theresa Nair, Moon Han, Reshma Punjani, Theodore Larson, Jasmine Berry, Suraya Mohidul & D. Kevin Horton


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

Journal Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration
Summary This is the first ever paper from the National ALS Registry to report on the state-level prevalence of ALS within all 50 states of the US. Previous prevalence reports looked at prevalence across the country as a whole. Researchers used data gathered between 2011 and 2018 from the existing national administrative databases (Medicare, Veterans Health Administration, and Veterans Benefits Administration) and the Registry web portal. Prevalence for each state ranged from 2.5 per 100,000 in Hawaii at the lowest end, to 7.8 per 100,000 in Vermont at the highest end. New England and Midwestern states had a higher prevalence than the national average.

The Registry hopes to further understand the causes of state and regional differences in ALS prevalence by continuing efforts to keep the date up to date and complete.

Link to paper Read the paper here!