National ALS Registry Dashboard

National ALS Registry Dashboard
Estimated living persons/cases (≥18 years) with ALS in the United States in 2017 (Prevalence1)*
Map of the US with number 24,821 mean (average)
Cases by race and gender, 2014-2016
Year 2017
Characteristic Estimated No. cases
Total 17,800 (lower-bound) to 31,843 (upper-bound)
Gender*
 Male 11,034 (62.0)
 Female 6,750 (37.9)
 Unknown 16 (0.1)
Race*
 White 12,929 (72.6)
 Black 1,131 (6.4)
 Other 973 (5.5)
 Unknown 2,767 (15.5)

*Gender and Race totals equal to the lower bound estimate of cases (n=17,800).

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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Related

1 Prevalence: is the proportion of people with a particular disease during a given time period. Calendar year 2017 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 JHU 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 March 28, 2022 and are updated quarterly.