State and metropolitan area-based amyotrophic lateral sclerosis (ALS) surveillance

Figures & data

Table I. Catchment areas for participating sites.

Participating site	Catchment area	Population^a
Atlanta, Georgia	Cobb, Clayton, DeKalb, Fulton, and Gwinnett Counties	3,365,297
Baltimore, Maryland	City of Baltimore, Baltimore and Howard Counties	1,713,075
Chicago, Illinois	Cook (including City of Chicago) and DuPage Counties	6,111,599
Detroit, Michigan	Wayne County	1,820,584
Las Vegas, Nevada	Clark County	1,951,269
Los Angeles, California	Los Angeles County	9,818,605
Philadelphia, Pennsylvania	Philadelphia County	1,526,006
San Francisco, California	Alameda, Contra Costa, San Francisco, San Mateo, and Solano Counties	4,496,326
Florida	Entire State (67 Counties)	18,801,310
New Jersey	Entire State (21 Counties)	8,791,894
Texas	Entire State (254 Counties)	25,738,765

^a Population based on the 2010 U.S. Census, midyear of the three-year project period.¹⁴

Figure 1. Flowchart showing neurologists reporting cases.

Table II. Demographic characteristics of ALS patients reported by project areas.

	Combined areas n = 5883		States n = 3620		Metropolitan areas n = 2263
	#	%	#	%	#	%
Age (in years)
< 30	75	1.3	37	1.0	38	1.7
30 – 39	262	4.4	159	4.4	103	4.6
40 – 49	748	12.7	452	12.5	296	13.1
50 – 59	1405	23.9	840	23.2	565	24.9
60 – 69	1698	28.9	1076	29.7	622	27.5
70 – 79	1238	21.0	794	21.9	444	19.6
≥ 80	403	6.9	237	6.6	166	7.3
Unknown	54	0.9	25	0.7	29	1.3
Gender
Male	3322	56.5	2047	56.5	1275	56.3
Female	2561	43.5	1573	43.5	988	43.7
Race
White	4401	74.8	2808	77.6	1593	70.4
African American/black	546	9.3	241	6.7	305	13.5
Asian	214	3.6	72	2.0	142	6.3
Other	18	0.3	8	0.2	10	0.4
Unknown	704	12.0	491	13.6	213	9.4
Ethnicity
Hispanic	634	10.8	410	11.3	224	9.9
Non-Hispanic	4562	77.5	2804	77.5	1758	77.7
Unknown	687	11.7	406	11.2	281	12.4

Table III. El Escorial criteria of reported prevalent ALS patients – 1 January 2009 through 31 December 2011 by project areas.

El Escorial criteria Classification	Combined areas		States		Metropolitan areas
	#	%	#	%	#	%
Definite	3069	52.2	2016	55.7	1053	46.6
Probable	1295	22.0	750	20.7	545	24.1
Probable (lab-supported)	482	8.2	271	7.5	211	9.3
Possible	754	12.8	423	11.7	331	14.6
Not classifiable	283	4.8	160	4.4	123	5.4
Total	5883	100.0	3620	100.0	2263	100.0

Table IV. Time from symptom onset to diagnosis of reported ALS patients by project areas.

	Combined areas		States		Metropolitan areas
	#	%	#	%	#	%
< 12 months^a	2588	44.0	1623	44.8	965	42.6
12-17 months	1059	18.0	643	17.8	416	18.4
≥ 18 months^b	1815	30.9	1061	29.3	754	33.3
Unknown	421	7.1	293	8.1	128	5.7
Total	5883	100.0	3620	100.0	2263	100.0

^aPatients with unknown month of diagnosis or month of symptom onset were included in the < 12 months category when the years were the same.

^bPatients with missing month of onset symptom but year was present and were three years or more apart were placed in the ≥ 18-month category.