Essential Questionnaire

[ATSDR] National Amyotrophic Lateral Sclerosis (ALS) Registry

P_AppE1 - Essential Questionnaire

Essential Questionnaire

OMB: 0923-0041

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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




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