|Characteristic||Estimated No. cases*|
*Not all data are displayed.
*Approximately 5% of the total number of definite cases are in both the web portal and administrative databases.
|Characteristic||Estimated No. (%) cases||Estimated No. (%) cases||Estimated No. (%) cases|
|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)|
|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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View a list of conferences and events that the Registry attends and participates.
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.