Essential Questionnaire

A

Form Approved

OMB No. 0923-0041

Exp. Date 01/31/2023

PPENDIX E1

ESSENTIAL QUESTIONNAIRE

ATSDR estimates the average public reporting burden for this collection of information as 6 minutes per response, including the time for reviewing instructions, searching existing data/information sources, gathering, and maintaining the data/information needed, and completing and reviewing the collection of information. An agency may not conduct or sponsor, and a person is not required to respond to a collection of information unless it displays a currently valid OMB Control Number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden to CDC/ATSDR Information Collection Review Office, 1600 Clifton Road NE, MS D-74, Atlanta, Georgia 30333; ATTN: PRA (0923-0041).

Essential questionnaire is composed of the following sections:

• Thirty-three items to complete upon registration to assess general information about the patient with ALS (Items 1-33).

• The first of 3 longitudinal assessment of disease progression to record ALS-related functional status at the time of registration (Item 34/APPENDIX E2).

GO TO: Upon selection of the response, more questions pertaining to the response will be followed upon completion of registration.

ENTER: Upon selection, patients are prompted to enter the response manually.

ITEM	VARIABLE CODE	RESPONSE	DESCRIPTION	BURDEN
1	S17_Q07		Have you participated in any ALS research studies?
		1	Yes
		2	No
		9	Don't know
2	S17_Q07A		Are you interest in participating in any ALS research studies?
		1	Yes
		2	No
		9	Don't know
3	S1_Q05		Current marital status
		1	Never married
		2	Married
		3	Separated
		4	Divorced
		5	Widowed
		6	Living with partner
4	S1_Q06		Highest level of education attained
		1	Did not complete High School; Less than 12th grade
	S1_Q06A		ENTER:
		2	High school diploma or GED
		3	Technical or trade school diploma
		4	Some college credit
		5	College degree (AA, BS, BA, etc)
		6	Graduate School degree
	S1_Q06B		ENTER:
		7	Other (specify)
			ENTER:
5	S1_Q07		Do you consider yourself Spanish, Hispanic, or Latino/Latina?
		1	No
		2	Puerto Rican
		3	Mexican, Mexican-American, Chicano
		4	Cuban
		5	Other Spanish, Hispanic (specify)
			ENTER:
6	S1_Q08		What do you consider to be your race or ethnic group? (Check all that apply)
	S1_Q08A	1	White
	S1_Q08B	2	African American
	S1_Q08C	3	Native American/Alaskan Native
	S1_Q08D	4	Asian Indian
	S1_Q08E	5	Chinese
	S1_Q08F	6	Filipino
	S1_Q08G	7	Japanese
	S1_Q08H	8	Korean
	S1_Q08I	9	Vietnamese
	S1_Q08J	10	Other Asian (specify)
	S1_Q08J_01		ENTER:
	S1_Q08K	11	Native Hawaiian
	S1_Q08L	12	Guamanian or Chamorro
	S1_Q08M	13	Samoan
	S1_Q08N	14	Another Pacific Islander (specify)
	S1_Q08N_01		ENTER:
	S1_Q08O	15	Don’t know
7	S1_Q09		Country of birth
			ENTER: SEE COUNTRY
8	S16_Q01		Please enter your ideas or thoughts regarding the factors that may have caused your ALS.
			ENTER:
	S16_Q02		Please enter any ideas about factors that may cause ALS in general
			ENTER:
9a	S1_Q10A		Current height (ft)
			ENTER:
			GO TO: APPENDIX E 4.1
9b	S1_Q10B		Current height (in)
			ENTER:
			GO TO: APPENDIX E 4.1
10	S1_Q11		Current weight (pounds)
			ENTER:
			GO TO: APPENDIX E 4.1
11	S4_Q01		Have you ever smoked one or more cigarettes per day for 6 months or longer?
		1	Yes
			GO TO: APPENDIX E 4.2
		2	No
		9	Don't know
12	S4_Q07		Did you ever drink alcoholic beverages such as wine, beer and spirits at least once a month for 6 months or more
		1	Yes
			GO TO: APPENDIX E 4.2
		2	No
		9	Don't know
13	S5_Q01		Have you ever engaged in vigorous leisure-time physical activity for at least 10 minutes that caused heavy sweating or large increases in breathing or heart rate
		1	Yes
			GO TO: APPENDIX E 4.3
		2	No
		9	Don't know
14			Did you ever drink caffeinated beverages? (Check all that apply)	DOWN; Combines 5 into one question
		0	No
	S13_Q01	1	Espresso or expresso drinks (i.e. Latte, Americano)
			GO TO: APPENDIX E 4.4
	S13_Q02	2	Regular coffee
			GO TO: APPENDIX E 4.4
	S13_Q03	3	Hot or cold tea (i.e. black, green)
			GO TO: APPENDIX E 4.4
	S13_Q04	4	Highly caffeinated drinks (i.e. Jolt®, Surge®, Mountain Dew MDX®, Red Bull® or other energy drinks)
			GO TO: APPENDIX E 4.4
	S13_Q05	5	Regular soda (i.e. cola, Barq’s Root Beer ® or regular Mountain Dew®)
			GO TO: APPENDIX E 4.4
		6	Don’t know
15	S18_Q01		Have you participated in organized or professional sports? (Check all that apply)	DOWN; Combines 7 into one question
		0	No
	S18_Q02	1	Football
			GO TO: APPENDIX E 4.7
	S18_Q07	2	Hockey
			GO TO: APPENDIX E 4.7
	S18_Q13	3	Boxing
			GO TO: APPENDIX E 4.7
	S18_Q16	4	Soccer
			GO TO: APPENDIX E 4.7
	S18_Q22	5	Other sports
			GO TO: APPENDIX E 4.7
		6	Don’t know
16			Have you ever had an injury to your head or neck due to the following? (Check all that apply)	DOWN; Combines 5 into one question
		0	No
	S14_Q01	1	Childhood injuries
			GO TO: APPENDIX E 4.5
	S14_Q02	2	Car accident or moving vehicle
			GO TO: APPENDIX E 4.5
	S14_Q03	3	Falling or being hit or playing sports
			GO TO: APPENDIX E 4.5
	S14_Q04	4	Fights/Violence/Shaken
			GO TO: APPENDIX E 4.5
	S14_Q05	5	Explosion/Blast
			GO TO: APPENDIX E 4.5
		6	Don’t know
17			Have you ever received any electrical shock that resulted in the following? (Check all that apply)	DOWN; Combines 3 into one question
		0	No
	S14_Q06	1	Unconsciousness
			GO TO: APPENDIX E 4.6
	S14_Q07	2	Burn
			GO TO: APPENDIX E 4.6
	S14_Q08	3	Just the electrical shock
			GO TO: APPENDIX E 4.6
		4	Don’t know
18			What kind of health insurance or health care coverage do you have? Exclude private plans that only provide extra cash while hospitalized. If you have more than one kind of health insurance, please check the box next to each plan that you have. (Check all that apply)
	S15_Q01	1	HMO
	S15_Q01_01	2	Private health insurance (non-HMO employer-sponsored)
	S15_Q01_02	3	Medicare
	S15_Q01_03	4	Medi- GAP (private insurance that supplements Medicare)
	S15_Q01_04	5	Medicaid
	S15_Q01_05	6	VA (Veteran’s Administration)
	S15_Q01_06	7	Other military health care (CHAMP, TRICARE, Department of Defense health plans)
	S15_Q01_07	8	Indian Health Service
	S15_Q01_08	9	State-sponsored health plan
	S15_Q01_09	10	Other government program (specify)
	S15_Q01_10		ENTER:
	S15_Q01_11	11	Other health insurance plan: (specify)
	S15_Q01_12		ENTER:
	S15_Q01_13	12	No health care coverage of any type
	S15_Q01_14	13	Don’t know
19	S2_Q01		What is your current employment status?
		1	Full-time employed
			GO TO: APPENDIX E 5.1
		2	Part-time employed
			GO TO: APPENDIX E 5.1
		3	Retired
			GO TO: APPENDIX E 5.1
		4	Disabled
			GO TO: APPENDIX E 5.1
		5	Full-time student
			GO TO: APPENDIX E 5.1
		6	Homemaker
			GO TO: APPENDIX E 5.1
		7	Unemployed
			GO TO: APPENDIX E 5.1
		8	Other (specify)
	S2_Q01_01		ENTER:
20	S3_Q01		Were you ever a member of the armed forces? (Check all that apply)	DOWN; S3_Q01
		0	No
	S3_Q02A	1	Army
	S3_Q02B	2	Navy
	S3_Q02C	3	Marines
	S3_Q02D	4	Air Force
	S3_Q02E	5	Reserves/National Guard
	S3_Q02F	6	Coast Guard
		7	Don’t know
21	S3_Q03		Were you ever deployed to a war arena? (Check all that apply)	DOWN; S3_Q03
		0	No
	S3_Q04A	1	World War II
	S3_Q04B	2	Korean Conflict
	S3_Q04C	3	Vietnam War
	S3_Q04D	4	Persian Gulf
	S3_Q04E	5	Afghanistan War
	S3_Q04F	6	Persian Gulf II
	S3_Q04G	7	Other (specify)
	S3_Q04G_01		ENTER:
22			Over your lifetime (at least 100 days or more), have you ever had a job where you worked with the following pesticides? (Check all that apply)	DOWN; Combines 5 into one question
		0	No
	S9_Q01	1	Herbicides
			GO TO: APPENDIX E 5.2/5.2.1
	S9_Q02	2	Fungicides
			GO TO: APPENDIX E 5.2/5.2.2
	S9_Q03	3	Insecticides
			GO TO: APPENDIX E 5.2/5.2.3
	S9_Q04	4	Rodenticides
			GO TO: APPENDIX E 5.2/5.2.4
	S9_Q05	5	Fumigants
			GO TO: APPENDIX E 5.2/5.2.5
		6	Don’t know
23			Over your lifetime (at least 100 days or more), have you ever had a job where you were exposed to the following chemicals? (Check all that apply)	DOWN; Combines 6 into one question
		0	No
	S9_Q06	1	Glues or adhesives
			GO TO: APPENDIX E 5.2/5.2.6
	S9_Q07	2	Solvents and degreasers
			GO TO: APPENDIX E 5.2/5.2.7
	S9_Q08	3	Unleaded gasoline
			GO TO: APPENDIX E 5.2/5.2.8
	S9_Q10	4	Unleaded paint
			GO TO: APPENDIX E 5.2/5.2.9
	S9_Q12	5	Formaldehyde
			GO TO: APPENDIX E 5.2/5.2.10
	S9_Q16	6	Other chemicals
			GO TO: APPENDIX E 5.2/5.2.11
		7	Don’t know
24			Over your lifetime (at least 100 days or more), have you ever had a job where you were exposed to the following metals/metal work? (Check all that apply)	DOWN; Combines 5 into one question
		0	No
	S9_Q09	1	Leaded gasoline
			GO TO: APPENDIX E 5.2/5.2.12
	S9_Q11	2	Lead paint
			GO TO: APPENDIX E 5.2/5.2.13
	S9_Q13	3	Soldering
			GO TO: APPENDIX E 5.2/5.2.14
	S9_Q14	4	Welding/brazing/flame cutting
			GO TO: APPENDIX E 5.2/5.2.15
	S9_Q15	5	Metal dust or fume
			GO TO: APPENDIX E 5.2/5.2.16
		6	Don’t know
25			Have you ever personally handled any of the following outside job (such as home or garden) for a potential exposure to pesticides? (Check all that apply)	DOWN; S10_Q01 Combines 5 into one question
		0	No
	S10_Q03	1	Herbicides
			GO TO: APPENDIX E 5.3/5.3.1
	S10_Q04	2	Fungicides
			GO TO: APPENDIX E 5.3/5.3.2
	S10_Q01/ S10_Q02	3	Insecticides
			GO TO: APPENDIX E 5.3/5.3.3
	S11_Q09	4	Gardening
			GO TO: APPENDIX E 5.3/5.3.4
		5	Don’t know
26			Have you ever personally handled any of the following outside job (such as home or garden) for a potential exposure to chemicals? (Check all that apply)	DOWN; Combines 7 into one question
		0	No
	S10_Q05	1	Pet tick/flea treatment (soaps, shampoos, dips, or powder)
			GO TO: APPENDIX E 5.3/5.3.5
	S11_Q01	2	Leatherwork
			GO TO: APPENDIX E 5.3/5.3.6
	S11_Q03	3	Oil-based painting
			GO TO: APPENDIX E 5.3/5.3.7
	S11_Q05	4	Woodworking
			GO TO: APPENDIX E 5.3/5.3.8
	S11_Q06	5	Car or tire repairing/restoring/oil change
			GO TO: APPENDIX E 5.3/5.3.9
	S11_Q07	6	Using glue to build wooden/plastic models
			GO TO: APPENDIX E 5.3/5.3.10
	S11_Q08	7	Developing photographs
			GO TO: APPENDIX E 5.3/5.3.11
		8	Don’t know
27			Have you ever personally handled any of the following outside job (such as home or garden) for a potential exposure to metals? (Check all that apply)	DOWN; Combines 9 into one question
		0	No
	S11_Q02	1	Glazing pottery/ceramics
			GO TO: APPENDIX E 5.3/5.3.12
	S11_Q04	2	Remodeling/paint scraping on homes built before 1960
			GO TO: APPENDIX E 5.3/5.3.13
	S11_Q010	3	Soldering, welding, metal work
			GO TO: APPENDIX E 5.3/5.3.14
	S11_Q011	4	Outdoor hunting or shooting
			GO TO: APPENDIX E 5.3/5.3.15
	S11_Q012	5	Indoor range gun shooting
			GO TO: APPENDIX E 5.3/5.3.16
	S11_Q013	6	Bullet casting or reloading
			GO TO: APPENDIX E 5.3/5.3.17
	S11_Q014	7	Fishing with lead weights/sinkers
			GO TO: APPENDIX E 5.3/5.3.18
	S11_Q015	8	Knitting and jewelry making/Other hobbies (1)
	S11_Q15_01		ENTER:
			GO TO: APPENDIX E 5.3/5.3.19
	S11_Q016	9	Other hobbies (2) (specify)
	S11_Q16_01		ENTER:
			GO TO: APPENDIX E 5.3/5.3.20
		10	Don’t know
28a			To the best of your knowledge, have you ever lived for more than 6 months in areas with following environment AT BIRTH? (Check all that apply)	DOWN; Combines 3 into one question
		0	No
	S8_Q04	1	Farm or ranch
			GO TO: APPENDIX E 5.4 RESIDENCE HISTORY SURVEY
	S8_Q05	2	Private well as source of water
			GO TO: APPENDIX E 5.4 RESIDENCE HISTORY SURVEY
	S8_Q06	3	Within ¼ miles of agricultural area sprayed with pesticides/herbicides
			GO TO: APPENDIX E 5.4 RESIDENCE HISTORY SURVEY
		4	Don’t know
			GO TO: APPENDIX E 5.4 RESIDENCE HISTORY SURVEY
28b	S8_Q07		Was this your current or most recent residence?
		1	Yes
		2	No
			GO TO: APPENDIX E 5.4 RESIDENCE HISTORY SURVEY
29			Has any member of your immediate biological family member diagnosed with ALS, Parkinson’s, or Alzheimer’s disease? (Check all that apply)	DOWN; Assess general family history across 15 questions
		0	No
	S6_Q03M1 – M3	1	Mother
			GO TO: APPENDIX E 6.1
	S6_Q03F1 – F3	2	Father
			GO TO: APPENDIX E 6.1
	S6_Q06S1 – S3	3	Sister
			GO TO: APPENDIX E 6.1
	S6_Q06B1 – B3	4	Brother
			GO TO: APPENDIX E 6.1
	S6_Q06C1 – C3	5	Children
			GO TO: APPENDIX E 6.1
		6	Don’t know
30a	S17_Q02		In what part of the body did you first notice weakness that was diagnosed as ALS.
		0	Not applicable
		1	Speech and or swallowing muscles
			GO TO: APPENDIX E 6.2
		2	Arm or hand
			GO TO: APPENDIX E 6.2
		3	Neck, back or abdominal area
			GO TO: APPENDIX E 6.2
		4	Leg or foot
			GO TO: APPENDIX E 6.2
		5	Breathing muscles
			GO TO: APPENDIX E 6.2
		6	All over my body
			GO TO: APPENDIX E 6.2
		7	Don’t know
30b			Before you noticed weakness that turned out to be ALS, did you experience any of the following? (Check all that apply)	DOWN; Combines 5 into one question
		0	No
	S17_Q03A	1	Cramps or muscle spasm
			GO TO: APPENDIX E 6.2
	S17_Q03B	2	Scattered muscle twitching
			GO TO: APPENDIX E 6.2
	S17_Q03C	3	Difficulty swallowing
			GO TO: APPENDIX E 6.2
	S17_Q03D	4	Problems with speech
			GO TO: APPENDIX E 6.2
	S17_Q03E	5	Difficulty controlling bowels or bladder
			GO TO: APPENDIX E 6.2
		6	Don’t know
31			Have you ever used/had the following? (Check all that supply)	DOWN; Combines 5 into one question
		0	No
	S17_Q05A	1	Wheelchair/Electric scooter
			GO TO: APPENDIX E 6.3
	S17_Q05B	2	Breathing equipment (BiPap®)
			GO TO: APPENDIX E 6.3
	S17_Q05C	3	Tracheostomy
			GO TO: APPENDIX E 6.3
	S17_Q05D	4	Communication device
			GO TO: APPENDIX E 6.3
	S17_Q05E	5	Hospice program
			GO TO: APPENDIX E 6.3
		6	Don’t know
32			Since you developed ALS, have you had any of the following? (Check all that apply)	DOWN; Combines 3 into one question
		0	No
	S17_Q06A	1	Pneumonia
	S17_Q06B	2	Falls
	S17_Q06C	3	Blood clot
		4	Don’t know
33			Are you currently taking or have you ever taken the following medication? (Check all that apply)	DOWN; Combines 2 into one question
		0	No
	S17_Q04	1	riluzole (Rilutek®)
			GO TO: APPENDIX E 6.3
	S17_Q04A	2	edaravone (Radicava®)
			GO TO: APPENDIX E 6.3
		3	Don’t know
34			GO TO: APPENDIX E2 Disease Progression Questionnaire

12