A brief report on juvenile amyotrophic lateral sclerosis cases in the United States National ALS Registry: 2010–2018

Figures & data

Table 1 Demographics of jALS patients (N = 44) based on year the patient became a confirmed or likely case, National ALS Registry, 2010–2018.

	Overall N = 44 %)
Age (years)^a
< 24	27 (61.4)
24	17 (38.6)
Race/Ethnicity
Non-Hispanic White	20 (45.5)
Other Race/Ethnicities	24 (54.5)
Sex
Male	35 (79.5)
Female	9 (20.5)
Census Region
Midwest	11 (25.0)
Northeast	13 (29.5)
South	7 (15.9)
West	7 (15.9)
Unknown	6 (13.6)

Table 2 Age-adjusted rates of combined likely and confirmed cases and estimated prevalence for jALS patients in the National ALS Registry, 2015–2018.

Year	Cases	Population	Crude Rate*	Age-Adjusted Rate*
2015	34	30,796,315	0.18	0.21
2016	35	30,250,180	0.19	0.22
2017	34	29,947,400	0.19	0.21
2018	38	30,705,359	0.21	0.24

*per 100,000.

Figure 1 Prevalent jALS case ascertainment overlap in the National ALS Registry, 2011–2018.

a – Center for Medicaid/Medicare Services

b – Veterans Heath Administration/Veterans Benefits Administration