An electronic health record cohort of Veterans with amyotrophic lateral sclerosis

Figures & data

Table 1 Demographic characteristics of veterans with ALS included in cohort.

Age (years) at diagnosis, median (range)	68.0 (24.0–90.0^a)
Year of diagnosis, median (range)	2012 (2000–2020)
Male sex – no. (%)	19,336 (98.94%)
Race and Ethnicity
White race – no. (%)	14,231 (72.37%)
Black race – no. (%)	1006 (5.12%)
Other race – no. (%)^b	112 (0.01%)
None indicated – no. (%)	4313 (21.94%)
Hispanic ethnicity – no. (%)	380 (1.93%)
Median survival in days	590
Alive at end of observation – no. (%)	4242 (21.57%)

^aAny age greater than 90 years is listed as 90 years to minimize risk for re-identification.

^bAmerican Indian or Native Alaskan (7) Asian (19), Hawaiian Pacific Islander (15), Other (71).

Table 2 Military experience of veterans with ALS included in cohort.

Military branch at separation	Number (%)
Army	9709 (49.37%)
Navy	4346 (22.10%)
Air force	3473 (17.66%)
Marine corp	1762 (8.96%)
Coast guard	200 (1.02%)
Other^a	179 (0.91%)
Agent orange exposure	2357 (11.99%)
Radiation exposure	52 (0.26%)

^aNone listed (158); USPHS (7); Merchant Marines (7); Other (5); NOAA (2).

Figure 1 Number of newly diagnosed ALS cases in VHA EHR by year.

Figure 2 Age at time of ALS diagnosis by year of diagnosis.

Table 3 Prior enrollment in VHA at diagnosis and median survival by year of diagnosis.

Year	Enrollment in VHA prior to diagnosis (percent)	Median survival (days)
2000	69	784
2001	69	664
2002	74	651
2003	77	752
2004	73	629
2005	76	538
2006	80	536
2007	74	524
2008	76	538
2009	77	612
2010	79	571
2011	79	528
2012	79	590
2013	78	562
2014	75	587
2015	75	561
2016	77	605
2017	78	618
2018	80	599
2019	78	517
2020	80	n.d.
2000–2020	76	590

Table 4 Race and ethnicity trends by year of diagnosis.

Year	AI AN	Asian	Black Hisp	Black	HN PI	Other	Unk Hisp	Unk	White Hisp	White	Total
2000	0	0	0	23	0	1	5	915	14	321	1279
2001	0	0	0	17	0	0	0	568	9	202	796
2002	0	1	0	25	0	0	1	416	9	248	700
2003	0	0	0	23	0	2	0	219	11	349	604
2004	0	0	0	23	0	0	2	202	9	378	614
2005	0	0	0	23	0	1	3	131	8	376	542
2006	0	0	0	24	1	1	2	110	3	403	544
2007	0	0	0	19	0	1	4	93	8	394	519
2008	0	1	0	21	0	2	1	98	11	473	607
2009	1	2	0	54	1	4	3	187	16	959	1227
2010	1	0	0	42	0	4	4	171	5	813	1040
2011	1	1	0	61	0	5	5	152	14	792	1031
2012	0	0	0	59	2	2	2	134	15	838	1052
2013	1	2	0	46	0	7	9	121	15	887	887
2014	0	2	0	55	3	5	4	111	21	951	1152
2015	0	3	0	78	0	12	7	101	23	1066	1290
2016	1	2	1	81	1	2	9	98	20	987	1202
2017	1	0	0	88	1	5	6	101	20	1020	1242
2018	0	0	1	103	1	9	11	101	21	1000	1247
2019	0	3	0	84	1	4	10	100	18	880	1100
2020	1	2	0	55	3	5	6	90	12	612	786
2000-2020	7	19	2	1004	14	72	94	4219	282	13949	19662

AI AN: American Indian or Alaskan Native; Hisp: Hispanic (ethnicity); HN PI: Native Hawaiian or other Pacific Islander; Unk: Unknown (race).

Table 5 Additional clinical data for veterans with ALS in cohort.

Enrolled in VA prior to diagnosis – no. (%)	15,007 (76.32%)
Number of primary care visits per year – Mean (s.d)	3.46 (2.64)
Charlson Score at time of diagnosis – mean (s.d)	1.83 (2.47)
Had electromyography-nerve conduction study – no. (%)	5668 (28.82%)
Had pulmonary function test – no. (%)	9100 (46.28%)
Had neuropsychological evaluation – no. (%)	1388 (7.06%)
Prescribed riluzole – no. (%)	8072 (41.54%)
Prescribed edaravone – no. (%)	271 (1.38%)
Had Tracheostomy – no. (%)	1223 (6.22%)
Had an Autopsy – no. (%)	150 (0.76%)

Data availability statement

Data cannot be publicly shared because it involves sensitive Veteran Information. Data may be available for researchers who meet the criteria for access to confidential data after IRB as well as VA Research and Development Committee approval for the specific project. As a VA national legal policy, VA will only share sensitive patient data if there is a fully executed contractual agreement in place for the specific project. Common contractual mechanisms utilized for this type of data sharing include a Cooperative Research and Development Agreement (CRADA), and a Data Use Agreement (DUA). These agreements are typically negotiated in collaboration with the VA national Office of General Council (OGC) as well as attorneys from the collaborating institution, and the VA Privacy Office. These national sharing policies and standards also apply to deidentified data. Data requests may be sent to: VA Information Resource Center (VIReC) Building 18 Hines VA Hospital (151V) 5000 S. 5th Avenue Hines, IL 60141 3030 708-202-2413 708-202-2415 (fax) [email protected].