Established in 2010, the Registry collects and examines data on ALS patients in the U.S. to better describe the epidemiology of ALS. The Registry compiles data from national administrative databases (i.e., Centers for Medicare and Medicaid Services [CMS], Veterans Health Administration [VHA], Veterans Benefits Administration [VBA]), and from voluntary enrollment data through a web portal. Patients in the Registry must be at least 18 years of age. We examined Registry data from 2010–2018.

The Registry identified 44 patients, aged 18-24, who met the Registry definition of confirmed ALS (30 cases) or likely ALS (14 cases). Of those, 20 (37.8%) were diagnosed at age 24. JALS cases were more likely to be non-White (54.5%), male (79.5%), and live in the Midwest or Northeast regions (54.5%) of the U.S. Some 68.9% of the jALS cases were received from CMS, VHA, or VBA, and 16% came from the web portal only.