National ALS Registry Dashboard

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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.

How we came up with 29,824 cases
crc numbers

*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)
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
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
27 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
31 studies
Closed Studies where Recruitment Already Occurred
44 studies

Joining the National ALS Registry offers the chance to participate in research and be counted
Join Today and Be Counted

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 and are updated quarterly.