National ALS Registry Dashboard

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Projected living persons/cases (≥18 years) with ALS in the United States in 2025 (Prevalence1)*
Map of the US with number
Cases by race and gender, 2014-2016
Year 2025
Characteristic Projected No. cases*
Total 34,290
Sex*
 Male 17,509
 Female 14,908
Race*
 White 22,317
 Black 1,925
 Other 2,661
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*Not all data are displayed.

Estimated new persons/cases (≥18 years) with ALS in the United States during 2014-2016 (Incidence2)
Map of USA with number 4,861
Cases by race and gender, 2014-2016
Year 2014 2015 2016
Characteristic Estimated  No. (%) cases Estimated No. (%) cases Estimated No. (%) cases
Total 5,695 6,045 4,861
Sex
 Male 3,088 (54.2) 3,174 (52.5) 3,119 (64.2)
 Female 2,178 (38.2) 2,708 (44.8) 1,740 (35.8)
 Unknown 429 (7.5) 163 (2.7) 2 (0.0)
Race
 White 4,727 (83.0) 4,962 (82.1) 3,733 (76.8)
 Black 333 (5.8) 365 (6.0) 335 (6.9)
 Other 254 (4.5) 325 (5.4) 224 (4.6)
 Unknown 381 (6.7) 393 (6.5) 569 (11.7)
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The National ALS Registry – By the Numbers
NewU.S. Prevalence (CY 2025)
10.1 persons per 100,000 U.S. population
U.S. Incidence (CY 2019)
1.44 persons per 100,000 U.S. population
U.S. Mortality (CY2011-2014)
1.7 persons per 100,000 U.S. population
Completed Risk Factor Surveys by persons living with ALS
110,246 surveys
Published Journal Articles
120 publications
Research Studies Funded (Grants and Research Contracts)
28 studies
Research Studies Using Registry Biospecimens
35 studies3
Research Studies Using Registry Datasets
6 studies
Biorepository Premortem Participants
>1,700
Biorepository + Temple University ALS Postmortem Core
>95
Research Study Recruitment (Clinical Trials and Epidemiological Studies)
Active Studies Currently Recruiting
17 studies
Closed Studies where Recruitment Already Occurred
66 studies

Joining the National ALS Registry offers the chance to participate in research and be counted
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Related

1 Prevalence: is the proportion of people with a particular disease during a given time period. Calendar year 2018 is the most current prevalence data available at this time.

2 Incidence: the rate of new cases of a disease occurring in a specific population over a particular period of time. Calendar years 2014 – 2016 are the most current incidence data available at this time.

3 This does not include studies from the Temple University ALS Postmortem Core Tissue Core.

Note: Cases come from the Centers for Medicare & Medicaid Services (CMS), the Veterans Health Administration (VHA), Veterans Benefits Administration (VBA), & self-enrollment portal. These data, except for those in the portal, are requested by the Registry when available, but lags persist due to processing times for CMS and VHA/VBA.

Note: Statistics current as of 9/1/2023.