Prevalence of amyotrophic lateral sclerosis (ALS), United States, 2016

Figures & data

Figure 1 Algorithm used to identify cases of amyotrophic lateral sclerosis (ALS) in the United States.

Table 1 Number and percentage of amyotrophic lateral sclerosis (ALS) cases (N = 16,424) and estimated prevalence, by age group, sex, race, and geographic region per 100,000 population — National ALS Registry, United States, 2016.

Characteristic	No. (%) cases	Prevalence Rates, (95% CI)^a
Age Groups (yrs)
18−39	390 (2.3)	0.2 (0.18, 0.22)
40−49	1,274 (7.8)	3.4 (3.2, 3.6)
50−59	2,937 (17.9)	7.2 (6.9, 7.5)
60−69	4,809 (29.3)	13.2 (12.8, 13.6)
70−79	4,048 (24.6)	17.2 (16.7, 17.7)
≥80	1,503 (9.2)	11.9 (11.3, 12.5)
Unknown	1,463 (8.9)
Sex
Male	10,395 (62.3)	7.3 (7.2, 7.5)
Female	6,010 (38.9)	3.6 (3.5, 3.7)
Unknown	19 (0.1)
Race
White	12,222 (74.4)	5.0 (4.9, 5.1)
Black	1,060 (6.5)	3.4 (3.2, 3.6)
Other	901 (5.5)
Unknown	2,241 (13.6)
U.S. Census Region^b
Midwest	5,361 (32.6)	8.8 (8.6, 9.0)
Northeast	2,852 (17.4)	5.5 (5.2, 5.7)
South	3,501 (21.3)	3.2 (3.1, 3.3)
West	3,132 (19.1)	4.8 (4.6, 5.0)
Unknown	1,578 (9.6)
Total		5.2 (5.1, 5.3)

^aAge adjusted rates based on the 2000 US Standard Population. ^bU.S. Census Population by Geographical Regions: https://www.census.gov/popclock/data_tables.php?component=growth.

Figure 2 National ALS Registry Methodology.

Figure 3 Data Source of Patients Entering the National ALS Registry, 2016*.