National ALS Registry Dashboard
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Year | 2018 |
---|---|
Characteristic | Estimated No. cases* |
Total | 29,824 |
Sex* | |
Male | 16,821 |
Female | 14,506 |
Race* | |
White | 22,374 |
Black | 1,918 |
Other | 1,801 |
*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.
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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) |
Joining the National ALS Registry offers the chance to participate in research and be counted
Join Today and Be Counted
- Join the Registry
ALS research counts on you. Join the National ALS Registry and help the fight against ALS. - National ALS Biorepository
Learn how you can participate and help researchers learn more about ALS. - National ALS Registry Conferences and Events
View a list of conferences and events that the Registry attends and participates. - ALS Clinic Advisor Locator
View an interactive map developed by the ALS Geospatial Hub to locate the nearest ALS clinics in your area.
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.