National ALS Registry Dashboard

Estimated living persons/cases (≥18 years) with ALS in the United States in 2018 (Prevalence¹)*

Map of the US with number 24,821 mean (average)

Cases by race and gender, 2014-2016
Year	2018
Characteristic	Estimated No. cases*
Total	29,824
Gender*
Male	16,821
Female	14,506
Race*
White	22,374
Black	1,918
Other	1,801

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*Not all data are displayed.

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*Approximately 5% of the total number of definite cases are in both the web portal and administrative databases.

Estimated new persons/cases (≥18 years) with ALS in the United States during 2014-2016 (Incidence²)

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
Gender
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 (CY2018)

9.1 persons per 100,000 U.S. population

U.S. Incidence (CY2016)

1.6 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)

26 studies

Research Studies Using Registry Biospecimens

33 studies³

Research Studies Using Registry Datasets

6 studies

Biorepository Premortem Participants

>1,500

Biorepository + Temple University ALS Postmortem Core

>95

Research Study Recruitment (Clinical Trials and Epidemiological Studies)

Active Studies Currently Recruiting

10 studies

Closed Studies where Recruitment Already Occurred

66 studies

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View an interactive map developed by the ALS Geospatial Hub to locate the nearest ALS clinics in your area.

¹Prevalence: 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.

²Incidence: 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.