Appendix E- Surveys_v3

APPENDIX E

Modified 3/2021

Contents

1 ESSENTIAL QUESTIONNAIRE - 4 -

1.1 REGISTRATION - 4 -

1.2 DEMOGRAPHY - 5 -

1.3 LIFESTYLE FACTORS - 7 -

1.4 ENVIRONMENTAL FACTORS - 9 -

1.5 ALS-ASSOCIATED AND CLINICAL FACTORS - 12 -

2 FOLLOW-UP QUESTIONS 14

2.1 REGISTRATION 14

2.2 DEMOGRAPHY 14

2.3 LIFESTYLE INFORMATION 15

2.4 EVIRONMENTAL FACTORS - 26 -

2.5 ALS-ASSOCIATED AND CLINICAL FACTORS - 71 -

APPENDIX E

Surveys

ONE TIME SURVEYS

Questionnaire to be divided into Essential Questionnaire (Part I) and Follow-up Questions (Part II) by topic

General Instructions (on a separate screen before starting the survey)

How to fill in answers:

• Please read each survey question carefully and answer to the best of your knowledge.

• Answers to questions come in several formats:

• Radio button and drop-down selections allow only one input per question.

• Check box selections allow multiple answers per question.

• Text boxes allow you to type in an answer. Text box entries are identified as an empty box or selection labeled “Other (specify)”.

• Some questions within each survey will appear “grayed-out” because of your answer to an earlier question. These questions do not apply to you and you can continue onto the next survey question or page.

How the system works:

• When Essential Questionnaire (Part I) is completed and submitted, it’ll be followed by set of additional questions (Part II) asking for more detailed information regarding your demography, lifestyle, environmental, and ALS-associated factors. Follow-up questions are based on the responses from Part I.

• Each time you go to the next page of a survey your answers to the previous page are saved.

• You are given the option to save and quit a survey at anytime. Once you decide to save and quit the survey your responses are saved and you can finish the survey later.

• At the end of each survey, you are given the option to review and change your answers. You can also print a copy of your answers. Once you submit your answers, you will not be able to change or print them later.

• There is no time limit to take surveys. However, if you stay logged in and do not work on the survey an alert will display. You will be informed that your session will time out if no further activity takes place.

The purpose of this questionnaire is to obtain some general information about your demography, as well as information on lifestyle, environmental, and ALS-associated factors.

1. ESSENTIAL QUESTIONNAIRE

   EQ	Item	Responses	Origin	Follow-up
   1	Username (or REG_ID)		Registration
   2	Date of diagnosis	MM/YYYY	Registration
   3	Date of Registration	MM/DD/YYYY	Registration
   4	Title	1 Mr 2 Ms 3 Miss 4 Mrs 5 Dr
   5	First name		Registration
   6	Middle initial		Registration
   7	Last name		Registration
   8	Suffix	1 Jr 2 Sr 3 I 4 II 5 III 6 IV	Registration
   9	Last 5 digits of SSN		Registration
   10	Current country		Registration
   11	Current state/province (in US/Canada)		Registration
   12	Current province (outside US/Canada		Registration
   13	Current City		Registration
   14	Email		Registration
   15	Are you interested in receiving any of the following? (check all that apply)	0 No 1 Registry email 2 Research notification information	Registration
   16	Have you participated in any ALS research studies?	1 Yes 2 No 9 Don’t know	Survey 17
   17	Are you interest in participating in any ALS research studies	1 Yes 2 No 9 Don’t know	Survey 17

   1. REGISTRATION

2. DEMOGRAPHY

EQ	Item	Responses	Origin	Follow-up
1	Gender	1 Male 2 Female 	Survey 1	Survey 12
2a	Birth month	1 January 2 February 3 March 4 April 5 May 6 June 7 July 8 August 9 September 10 October 11 November 12 December	Registration
2b	Birth year		Registration
3	Current marital status	1 Never married 2 Married 3 Separated 4 Divorced 5 Widowed 6 Living with partner	Survey 1
4	Highest level of education attained	1 Did not complete High School; Less than 12th grade 2 High school diploma or GED 3 Technical or trade school diploma 4 Some college credit or AA degree 5 College degree 6 Graduate School degree 7 Other	Survey 1
5	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)	Survey 1	Question 7
6	What do you consider to be your race or ethnic group? (Check all that apply)	1 White 2 African American 3 Native American/Alaskan Native 4 Asian Indian 5 Chinese 6 Filipino 7 Japanese 8 Korean 9 Vietnamese 10 Other Asian (specify) 11 Native Hawaiian 12 Guamanian or Chamorro 13 Samoan 14 Another Pacific Islander (specify) 15 Don’t know	Survey 1
7	Country of birth		Survey 1

3. LIFESTYLE FACTORS

EQ	Item	Responses	Origin	Follow-up
1a	Current height (ft)		Survey 1
1b	Current height (in)		Survey 1
2	Current weight (pounds)		Survey 1
3	Have you ever smoked one or more cigarettes per day for 6 months or longer?	1 Yes  2 No 9 Don’t know	Survey 4	Question 2-6
4	Did you ever drink alcoholic beverages such as wine, beer and spirits at least once a month for 6 months or more	1 Yes  2 No 9 Don’t know	Survey 4	Question 8-10
5	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  2 No 9 Don’t know	Survey 5	Question 2
6	Did you ever drink caffeinated beverage? (Check all that apply)	0 No 1 Espresso or expresso drinks (Latte, Americano) 2 Regular coffee 3 Hot or cold tea (Black, green) 4 Highly caffeinated (Jolt®, Surge®, Mountain Dew MDX®, Red Bull® or other energy drinks) 5 Regular soda (Barq’s Root Beer ® or regular Mountain Dew®) 6 Don’t know	Survey 13	Box Row 1 Box Row 2 Box Row 3 Box Row 4 Box Row 5
7	Have you participated in organized or professional sports? (Check all that apply)	0 No 1 Football 2 Hockey 3 Boxing 4 Soccer 5 Other sports 6 Don’t know	Survey 18	Question 2-6 Question 7-12 Question 13-15 Question 16-21 Question 22-42
8	Have you ever had an injury to your head or neck due to the following? (Check all that apply)	0 No 1 Childhood injuries 2 Falling or being hit or playing sports 3 Fights/Violence 4 Car or moving vehicle 5 Explosion/Blast 6 Other 7 Don’t know	Survey 14 (1)	Box Row 1 Box Row 3 Box Row 4 Box Row 2 Box Row 5
9	Have you ever received any electrical shock that resulted in the following? (Check all that apply)	0 No 1 Unconsciousness 2 Burn 3 Just the electrical shock 4 Don’t know	Survey 14 (2)	Box Row 1 Box Row 2 Box Row 3
10	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)	1 HMO 2 Private health insurance (non-HMO employer-sponsored) 3 Medicare 4 Medi- GAP (private insurance that supplements Medicare) 5 Medicaid 6 VA (Veteran’s Administration) 7 Other military health care (CHAMP, TRICARE, Department of Defense health plans) 8 Indian Health Service 9 State-sponsored health plan 10 Other government program (specify) 11 Other health insurance plan: (specify) 12 No health care coverage of any type 13 Don’t know	Survey 15

4. ENVIRONMENTAL FACTORS

EQ	Item	Responses	Origin	Follow-up
1	What is your current employment status?	1 Full-time employed 2 Part-time employed 3 Retired 4 Disabled 5 Full-time student 6 Homemaker 7 Unemployed 8 Other (specify)	Survey 2	Question 2-5
2	Were you ever a member of the armed forces? (Check all that apply)	0 No 1 Army 2 Navy 3 Marines 4 Air Force 5 Reserves/National Guard 6 Coast Guard 7 Don’t know	Survey 3
3	Were you ever deployed to a war arena? (Check all that apply)	0 No 1 World War II 2 Korean Conflict 3 Vietnam War 4 Persian Gulf 5 Afghanistan War 6 Persian Gulf II 7 Other (specify)	Survey 3
4	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)	0 No 1 Herbicides 2 Fungicides 3 Insecticides 4 Rodenticides 5 Fumigants 6 Don’t know	Survey 9	Box Row 1 Box Row 2 Box Row 3 Box Row 4 Box Row 5
5	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)	0 No 1 Glues or adhesives 2 Solvents and degreasers 3 Unleaded gasoline 4 Unleaded paint 5 Formaldehyde 6 Other chemicals (specify) 7 Don’t know	Survey 9	Box Row 6 Box Row 7 Box Row 8 Box Row 10 Box Row 12 Box Row 16
6	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)	0 No 1 Leaded gasoline 2 Lead paint 3 Soldering 4 Welding/brazing/flame cutting 5 Metal dust or fume 6 Don’t know	Survey 9	Box Row 9 Box Row 11 Box Row 13 Box Row 14 Box Row 15
7	Have you ever personally handled any of the following outside work (such as home or garden) for a potential exposure to pesticides? (Check all that apply)	0 No 1 Herbicides 2 Fungicides 3 Insecticides 4 Gardening 5 Don’t know	Survey 10 Survey 11	Row 3 Row 4 Row 1 and 2 Box Row 9
8	Have you ever personally handled any of the following outside work (such as home or garden) for a potential exposure to chemicals? (Check all that apply)	0 No 1 Pet tick/flea treatment (soaps, shampoos, dips, or powder) 2 Leatherwork 3 Oil-based painting 4 Woodworking 5 Car repairing/restoring 6 Using glue to build wooden/plastic models 7 Developing photographs 8 Don’t know	Survey 10 Survey 11	Row 5 Box Row 1 Box Row 3 Box Row 5 Box Row 6 Box Row 7 Box Row 8
9	Have you ever personally handled any of the following outside work (such as home or garden) for a potential exposure to metals? (Check all that apply)	0 No 1 Glazing pottery/ceramics 2 Remodeling/paint scraping on homes built before 1960 3 Soldering, welding, metal work 4 Outdoor hunting or shooting 5 Indoor range gun shooting 6 Bullet casting or reloading 7 Fishing with lead weights/sinkers 8 Knitting and jewelry making 9 Other hobbies (specify) 10 Don’t know	Survey 11	Box Row 2 Box Row 4 Box Row 10 Box Row 11 Box Row 12 Box Row 13 Box Row 14 Box Row 15 Box Row 16
10	To the best of your knowledge, have you ever lived for more than 6 months in areas with following environment? (Check all that apply)	0 No 1 Farm or ranch 2 Private well as source of water 3 Within ¼ miles of agricultural area sprayed with pesticides/herbicides 6 Don’t know	Survey 8	Question 4 1,2, 3 Question 5 1,2, 3 Question 6/6a 1,2, 3

5. ALS-ASSOCIATED AND CLINICAL FACTORS

EQ	Item	Responses	Origin	Follow-up
1	Has any member of your immediate biological family member diagnosed with ALS, Parkinson’s, or Alzheimer’s disease? (Check all that apply)	0 No 1 Mother 2 Father 3 Sister 4 Brother 5 Children 6 Don’t know	Survey 6	Question M1-4 Question F1-4 Question 1, S1-4 Question 2, B1-4 Question 3, C1-5
2	Compared with the time before you had symptoms of ALS or another motor neuron disease: have you noticed changes in the following? (Check all that apply)	0 No 1 Speech 2 Amount of saliva 3 Swallowing 4 Handwriting 5 Ways of getting nutrition 6 Cutting food and handling utensils 7 Feeding tube use 8 Getting dressed and performing self-care activities 9 Turning in bed and adjusting bed sheet/blanket 10 Walking 11 Climbing stairs 12 Breathing and shortness of breath 13 Requiring respiratory support (BiPAP®) 14 Don’t know	Survey 7	Question 1 Question 2 Question 3 Question 4 Question 5 Question 6 Question 7 Question 8 Question 9 Question 10 Question 11 Question 12-13 Question 14
3	In what part of the body did you first notice weakness that was diagnosed as ALS. (Check all that apply)	0 Not applicable 1 Speech and or swallowing muscles 2 Arm or hand 3 Neck, back or abdominal area 4 Leg or foot 5 Breathing muscles 6 All over my body 7 Don’t know	Survey 17	Question 1 (IF ANY)
4	Before you noticed weakness that turned out to be ALS, did you experience any of the following? (Check all that apply)	0 No 1 Cramps or muscle spasm 2 Scattered muscle twitching 3 Difficulty swallowing 4 Problems with speech 5 Difficulty controlling bowels or bladder 6 Don’t know	Survey 17	Question 3 Box Row 1 Box Row 2 Box Row 3 Box Row 4 Box Row 5
5	Have you ever used/had the following? (Check all that supply)	0 No 1 Wheelchair/Electric scooter 2 Breathing equipment (BiPap®) 3 Tracheostomy 4 Communication device 5 Hospice program 6 Don’t know	Survey 17	Question 5 Box Row 1 Box Row 2 Box Row 3 Box Row 4 Box Row 5
6	Since you developed ALS, have you had any of the following? (Check all that apply)	0 No 1 Pneumonia 2 Falls 3 Blood clot 4 Don’t know	Survey 17	Question 6
7	Have you taken the either riluzole (Rilutek®) and/or edaravone (Radicava®)?	1 Yes  2 No 9 Don’t know	Survey 17	Question 4

Greyed out items are questions already covered in the Essential Questionnaire

2. FOLLOW-UP QUESTIONS

   1. REGISTRATION

No follow up questions.

2. DEMOGRAPHY

SURVEY 1

1. What is your date of birth?  

Month Year

2. How old are you today?  years old

3. How old were you when you were told by a neurologist that you had ALS?  years old

4. What is your gender? 1 Male 2 Female

5. What is your current marital status?

1 Never married 2 Married 3 Separated

4 Divorced 5 Widowed 6 Living with partner

6. What is the highest level of education that you have completed?

₁5 Did not complete High School – Specify highest grad completed 55

2 High school diploma or GED

3 Technical or trade school diploma

4 Some college credit

5 College degree (AA, BA, BS, etc)

6 Graduate school degree 7 Other (specify):________________

7. Do you consider yourself Spanish, Hispanic, or Latino/Latina?

₁ No ₂ Yes, Puerto Rican

₃ Yes, Mexican, Mexican American, Chicano ₄ Yes, Cuban

₅ Yes, other Spanish, Hispanic, or Latino/Latina (specify):

8. What do you consider to be your race or ethnic group? If you belong to more than one of these groups, please indicate all groups that apply to you.

1 White 2 Black or African-American

3 Native American or Alaska Native 4 Asian Indian

5 Chinese 6 Filipino

7 Japanese 8 Korean

9 Vietnamese 10 Other Asian (specify):_______________

11 Native Hawaiian 12 Guamanian or Chamorro

13 Samoan 14 Other Pacific Islander

(specify):_______________

99 Don’t know

19. In what country were you born?

______________________________________________________________________________

3. LIFESTYLE INFORMATION

We are now going to ask you to answer a few questions about your health-related lifestyle factors.

SURVEY 1: BMI

10. What is your current height?  (ft)  (in)

11. What is your current weight?  (lbs)

12. What was your height at age 40 years?  (ft)  (in)

13. What was your weight at age 40 years?  (lbs)

SURVEY 4: SMOKING AND ALCOHOL

1. Have you ever smoked one or more cigarettes per day for six months or longer?

1 Yes 2 No 9 Don’t know

2. If yes, how old were you when you first started smoking one or more cigarettes per day?  years old

3. Are you still a cigarette smoker?

₁ Yes ₂ No ₉ Don’t know

4. If no, at what age did you last stop smoking cigarettes?

 years old

5. During periods when you smoked, for how many years in total did you smoke cigarettes?

 years

6. During periods when you smoked, how many cigarettes did you usually smoke in a day? One pack contains 20 cigarettes.

 number cigarettes per day

ALCOHOL

7. Did you ever drink alcoholic beverages such as wine, beer and spirits at least once a month for 6 months or more?

1 Yes 2 No 9 Don’t know

8. Are you still drinking alcoholic beverages at least once per month?

₁ Yes ₂ No

9. During periods when you were drinking alcoholic beverages, for how many years in total did you drink alcoholic beverages?  years

10. During periods when you were drinking, how many alcoholic beverages did you usually have in a week OR month? A drink is 12 oz. beer, 4 ounces of wine or a drink containing 1 oz. of liquor. Please select week or month.

 number of drinks per ₁ week OR ₂ month

SURVEY 5: PHYSICAL ACTIVITY

1. Have you ever engaged in a routine that includes vigorous leisure-time physical activity for at least 10 minutes a day that caused heavy sweating or large increases in breathing or heart rate?

1 Yes 2 No 9 Don’t know

2. If yes, please indicate the number of times per week, month OR year that you engaged in vigorous activity for at least 10 minutes for each age period (up to your current age period).

Age period	Engaged in Physical Activity	Number of Times	Please check one Week Month Year
15-24 years	1 Yes 2 No		1 2 3
25-34 years	1 Yes 2 No 3 Age not applicable		1 2 3
35-44 years	1 Yes 2 No 3 Age not applicable		1 2 3
45-54 years	1 Yes 2 No 3 Age not applicable		1 2 3
55-64 years	1 Yes 2 No 3 Age not applicable		1 2 3
65 years or older	1 Yes 2 No 3 Age not applicable		1 2 3

SURVEY 13: CAFFEINE

The next questions pertain to your usual caffeine habits as an adult. By usual, we mean drinking the beverage at least once a month for six months or more.

Did you ever drink espresso or espresso drinks (Latte, Mocha, Americano)? A serving of espresso is 1 shot. 1 Yes  2 No 9 Don’t know	At what age did you FIRST drink espresso or espresso drinks at least once per month? Age 	Are you still drinking espresso or espresso drinks at least once per month? 1 Yes 2 No  9 Don’t know	If no, at what age did you LAST drink espresso or espresso drinks at least once per month? Age 	This is a total of __ __ years. Were there any periods of time during these __ __ years when you did NOT drink espresso or espresso drinks? If no, then record as 00 years).  Years	During the periods when you did drink espresso, how often (per day, week, month or year) did you drink them?  number of drinks per Please check one 1 day OR 2 week OR 3 month OR 4 year
Did you ever drink caffeinated coffee? A serving of coffee is 8 ounces. 1 Yes  2 No 9 Don’t know	At what age did you FIRST drink caffeinated coffee at least once per month? Age 	Are you still drinking caffeinated coffee at least once per month? 1 Yes 2 No  9 Don’t know	If no, at what age did you LAST drink caffeinated coffee at least once per month? Age 	This is a total of __ __ years. For how many of those years did you NOT drink caffeinated coffee?  Years	During the periods when you did drink caffeinated coffee, how often (per day, week, month or year) did you drink it?  number of drinks per Please check one 1 day OR 2 week OR 3 month OR 4 year

Did you ever drink caffeinated tea (green or black), hot or iced? A serving of tea is 8 oz. 1 Yes  2 No 9 Don’t know	At what age did you FIRST drink caffeinated tea at least once per month? Age 	Are you still drinking caffeinated tea at least once per month? 1 Yes 2 No  9 Don’t know	If no, at what age did you LAST drink caffeinated tea at least once per month? Age 	This is a total of __ __ years. For how many of those years did you NOT drink caffeinated tea?  Years	During the periods when you did drink caffeinated tea, how often (per day, week, month or year) did you drink them?  number of drinks per Please check one 1 day OR 2 week OR 3 month OR 4 year
Did you ever drink highly caffeinated drinks, including Jolt®, Surge®, Mountain Dew MDX®, Red Bull®? A serving of these drinks is a 12 oz can. 1 Yes  2 No 9 Don’t know	At what age did you FIRST drink highly caffeinated drinks at least once per month? Age 	Are you still drinking highly caffeinated drinks at least once per month? 1 Yes 2 No  9 Don’t know	If no, at what age did you LAST drink highly caffeinated drinks at least once per month? Age 	This is a total of __ __ years. For how many of those years did you NOT drink highly caffeinated drinks?  Years	During the periods when you did drink highly caffeinated drinks, how often (per day, week, month or year) did you drink them? 1 number of drinks per Please check one 1 day OR 2 week OR 3 month OR 4 year

Did you ever drink caffeinated soda, including colas, Barq’s Root Beer ® or regular Mountain Dew®? A serving of colas or root beer is a 12 oz can. 1 Yes  2 No 9 Don’t know

At what age did you FIRST drink caffeinated soda at least once per month? Age 

Are you still drinking caffeinated soda at least once per month? 1 Yes 2 No  9 Don’t know

If no, at what age did you LAST drink caffeinated soda at least once per month? Age 

This is a total of __ __ years. For how many of those years did you NOT drink caffeinated soda?  Years

During the periods when you did drink caffeinated soda, how often (per day, week, month or year) did you drink them?  number of drinks per Please check one 1 day OR 2 week OR 3 month OR 4 year

SURVEY 14: TRAUMA

HEAD and NECK INJURIES

The next questions are about injuries to your head and/or neck that that you may have had at anytime in your life. These may have occurred during sporting activities, from falls, violence, car accidents or other accidents. Please include injuries from both childhood and adulthood.

Have you ever had an injury to your head or neck? Think about any childhood injuries you remember or were told about. 1 Yes  2 No 9 Don’t know	IF YES How many head or neck injuries have you had? Num. 	At what age did the FIRST injury occur? Age 	Did you lose consciousness from this injury? 1 Yes  2 No 9 Don’t know	IF YES How long were you unconscious? 1 Less than 5 minutes 2 5-59 minutes 3 1-24 hours 4 Longer than a day 9 Don’t know	Did you go to the emergency room or were you hospitalized for this injury? 1 Yes 2 No 9 Don’t know	From this injury, did you have any of the following (check all that apply)? 1 Skull fracture 2 Seizure 3 Memory loss, amnesia 4 None of the above 9 Don’t know
Have you ever injured your head or neck in a car accident or from some other moving vehicle accident (e.g. motorcycle, ATV)? 1 Yes  2 No 9 Don’t know	IF YES How many accidents have you had? Num. 	At what age did the FIRST accident occur? Age 	Did you lose consciousness from this accident? 1 Yes  2 No 9 Don’t know	IF YES How long were you unconscious? 1 Less than 5 minutes 2 5-59 minutes 3 1-24 hours 4 Longer than a day 9 Don’t know	Did you go to the emergency room or were you hospitalized for this injury? 1 Yes  2 No 9 Don’t know	From this injury, did you have any of the following (check all that apply)? 1 Skull fracture 2 Seizure 3 Memory loss, amnesia 4 None of the above 9 Don’t know

Have you ever injured your head or neck in a fall or from being hit by something (e.g., falling from a bike, horse, or rollerblades, falling on ice, being hit by a rock)? Have you ever injured your head or neck playing sports or on the playground? 1 Yes  2 No 9 Don’t know	IF YES How many head or neck injuries from a fall or being hit by something have you had? Num. 	At what age did the FIRST head or neck injury from a fall or being hit by something occur? Age 	Did you lose consciousness from this injury? 1 Yes  2 No 9 Don’t know	IF YES How long were you unconscious? 1 Less than 5 minutes 2 5-59 minutes 3 1-24 hours 4 Longer than a day 9 Don’t know	Did you go to the emergency room or were you hospitalized for this injury? 1 Yes 2 No 9 Don’t know	From this injury, did you have any of the following (check all that apply)? 1 Skull fracture 2 Seizure 3 Memory loss, amnesia 4 None of the above 9 Don’t know
Have you ever injured your head or neck in a fight, from being hit by someone, or from being shaken violently? Have you ever been shot in the head? 1 Yes  2 No 9 Don’t know	IF YES How many head or neck injuries have you had in a fight or from other violence? Num. 	At what age did the FIRST head or neck injury in a fight or from other violence occur? Age 	Did you lose consciousness from this injury? 1 Yes  2 No 9 Don’t know	IF YES How long were you unconscious? 1 Less than 5 minutes 2 5-59 minutes 3 1-24 hours 4 Longer than a day 9 Don’t know	Did you go to the emergency room or were you hospitalized for this injury? 1 Yes 2 No 9 Don’t know	From this injury, did you have any of the following (check all that apply)? 1 Skull fracture 2 Seizure 3 Memory loss, amnesia 4 None of the above 9 Don’t know

Have you ever been nearby when an explosion or blast occurred? If you served in the military, think about any combat, or training related incidents? 1 Yes  2 No 9 Don’t know

IF YES How many times were you near an explosion or blast? Num. 

At what age did the FIRST head or neck injury from an explosion or blast occur? Age 

Did you lose consciousness from this injury? 1 Yes  2 No 9 Don’t know

IF YES How long were you unconscious? 1 Less than 5 minutes 2 5-59 minutes 3 1-24 hours 4 Longer than a day 9 Don’t know

Did you go to the emergency room or were you hospitalized for this injury? 1 Yes 2 No 9 Don’t know

From this injury, did you have any of the following (check all that apply)? 1 Skull fracture 2 Seizure 3 Memory loss, amnesia 4 None of the above 9 Don’t know

ELECTRICAL SHOCKS

Have you ever received a severe electrical shock that resulted in unconsciousness? 1 Yes  2 No 9 Don’t know	IF YES How many shocks of this type have you received? Number of times 	At what age did you FIRST receive a shock that resulted in unconsciousness? Age 
Have you ever received a severe electrical shock that resulted in a burn? 1 Yes  2 No 9 Don’t know	IF YES How many shocks of this type have you received? Number of times 	At what age did you FIRST receive a shock that resulted in a burn? Age 
Have you ever received a severe electrical shock that did not result in unconsciousness or a burn? 1 Yes  2 No 9 Don’t know	IF YES How many shocks of this type have you received? Number of times 	At what age did you FIRST receive a shock that did not result in unconsciousness or a burn? Age 

SURVEY 15: HEALTH INSURANCE

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.

Please mark all that apply

HMO 1

Private health insurance (non-HMO employer-sponsored) 2

MEDICARE 3

MEDI-GAP (private insurance that supplements Medicare) 4

MEDICAID 5

VA (Veteran’s Administration) 6

Other military health care (CHAMP, TRICARE, Department of Defense health plans) 7

Indian Health Service 8

State-sponsored health plan 9

Other government program (specify: _______________________________________) 10

Other health insurance plan: (specify: ______________________________________) 13

No health care coverage of any type 11

Don’t know 12

4. EVIRONMENTAL FACTORS

SURVEY 2: OCCUPATION

1. What is your current employment status?

1 Full-time employed 2 Part-time employed

3 Retired 4 Disabled

5 Full-time student 6 Homemaker

7 Unemployed 8 Other (specify):________________

2. If currently employed, what is your occupation? Please indicate your job title and the industry in which you work.

_________________________________________________________________________

JOB TITLE

________________________________________

INDUSTRY

3. For how many years have you been employed in this occupation?  years

4. Thinking about your entire working career, in which job were you employed for the longest period of time? Please indicate your job title, occupation, and the industry in which you worked.

_________________________________________________________________________

JOB TITLE

_________________________________________________________________________

INDUSTRY

5. For how many years were you employed in this occupation?  years

SURVEY 3: MILITARY HISTORY

1. Were you ever a member of the armed forces?

1 Yes 2 No 9 Don’t know

2. If yes, in which branch of service were you employed?

1 Army 2 Navy 3 Marines

4 Air Force 5 Reserves/National Guard 6 Coast Guard

3. Were you ever deployed to a war arena?

1 Yes 2 No

4. If yes, to which war arena were you deployed?

1 World War II 2 Korean Conflict

3 Vietnam War 4 Persian Gulf

5 Afghanistan War 6 Persian Gulf II

7 Other (specify):________________

SURVEY 8: RESIDENCE HISTORY

We are interested in the location of your residences for all the places where you lived for a period of 6 months or longer. Starting with the place where you were born, indicate the city and state (or country) of each place where you lived for 6 months or longer. If you lived on a farm, please give the nearest city or town. If you moved to a different residence within the same city, please include each home or dwelling as a separate entry.

Helpful Hint: Consider making a list of places you have lived before you start this survey.

1. At what age did you move to your next residence of 6 months or longer?	2. In what city or town was this residence?	3. In what state (or country) was this residence?	4. Was this residence a farm or a ranch?	5. Was your main source of drinking water at this residence a private well?	6. Was this residence within ¼ mile of an agricultural area that was sprayed with pesticides or herbicides?	6a. IF YES How often did the pesticide or herbicide spraying happen?
BIRTH	____________	_____________	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 < 1 time/year 2 1-3 times/year 3 > 4 times/year 9 Don’t know
AFTER EVERY RESIDENCE ASK: Was this your current or most recent residence? 1 Yes 2 No (if no go to Next Residence)
 years old	____________	_____________	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 < 1 time/year 2 1-3 times/year 3 > 4 times/year 9 Don’t know
 years old	____________	_____________	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 < 1 time/year 2 1-3 times/year 3 > 4 times/year 9 Don’t know
 years old	____________	_____________	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 < 1 time/year 2 1-3 times/year 3 > 4 times/year 9 Don’t know
 years old	____________	_____________	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 Yes 2 No 9 Don’t know	1 < 1 time/year 2 1-3 times/year 3 > 4 times/year 9 Don’t know

SURVEY 9: LIFETIME OCCUPATIONAL HISTORY

The following questions ask about pesticides or chemicals that you may have used at work during at least 100 days or more during your lifetime.

PESTICIDES

We are interested in those pesticide products that you personally handled on the JOB, either by preparing them prior to application, by applying them yourself or by helping to clean up after they were applied.

Over your lifetime (at least 100 days or more), have you ever had a JOB where you handled HERBICIDES (to kill weeds)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST handle herbicides? Age 	At what age did you LAST handle herbicides? Age 	This is a total of __ __ years. For how many of those years did you NOT use herbicides? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you handled FUNGICIDES (to control mildew, mold or rot)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST handle fungicides? Age 	At what age did you LAST handle fungicides? Age 	This is a total of __ __ years. For how many of those years did you NOT use fungicides? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you handled INSECTICIDES (to control insects or pests)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST handle insecticides? Age 	At what age did you LAST handle insecticides? Age 	This is a total of __ __ years. For how many of those years did you NOT use insecticides? Years 

Over your lifetime (at least 100 days or more), have you ever had a JOB where you handled RODENTICIDES (to kill rats or mice)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST handle rodenticides? Age 	At what age did you LAST handle rodenticides? Age 	This is a total of __ __ years. For how many of those years did you NOT use rodenticides? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you handled FUMIGANTS (gas used to kill fungus, mold or insects)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST handle fumigants? Age 	At what age did you LAST handle fumigants? Age 	This is a total of __ __ years. For how many of those years did you NOT use fumigants? Years 

SOLVENTS

Over your lifetime (at least 100 days or more), have you ever had a JOB where you used GLUES OR ADHESIVES? 1 Yes  2 No 9 Don’t know	At what age did you FIRST use glues or adhesives? Age 	At what age did you LAST use glues or adhesives? Age 	This is a total of __ __ years. For how many of those years did you NOT use glues or adhesives? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you used SOLVENTS AND DEGREASERS? 1 Yes  2 No 9 Don’t know	At what age did you FIRST use solvents and degreasers? Age 	At what age did you LAST use solvents and degreasers? Age 	This is a total of __ __ years. For how many of those years did you NOT use solvents and degreasers? Years 

Over your lifetime (at least 100 days or more), have you ever had a JOB where you worked with UNLEADED GASOLINE? 1 Yes  2 No 9 Don’t know	At what age did you FIRST work with unleaded gasoline? Age 	At what age did you LAST work with unleaded gasoline? Age 	This is a total of __ __ years. For how many of those years did you NOT use unleaded gasoline? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you worked with LEADED GASOLINE? 1 Yes  2 No 9 Don’t know	At what age did you FIRST work with leaded gasoline? Age 	At what age did you LAST work with leaded gasoline? Age 	This is a total of __ __ years. For how many of those years did you NOT use leaded gasoline? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you used UNLEADED PAINT? 1 Yes  2 No 9 Don’t know	At what age did you FIRST use unleaded paint? Age 	At what age did you LAST use unleaded paint? Age 	This is a total of __ __ years For how many of those years did you NOT use unleaded paint? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you used LEADED PAINT? 1 Yes  2 No 9 Don’t know	At what age did you FIRST use leaded paint? Age 	At what age did you LAST use leaded paint? Age 	This is a total of __ __ years. For how many of those years did you NOT use leaded paint? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you used FORMALDEHYDE? 1 Yes  2 No 9 Don’t know	At what age did you FIRST use formaldehyde? Age 	At what age did you LAST use formaldehyde? Age 	This is a total of __ __ years. For how many of those years did you NOT use formaldehyde? Years 

METALS

Over your lifetime (at least 100 days or more), have you ever had a JOB where you SOLDERED? 1 Yes  2 No 9 Don’t know	At what age did you FIRST solder? Age 	At what age did you LAST solder? Age 	This is a total of __ __ years. For how many of those years did you NOT solder? Years 	What specific metals or materials did you solder? Tin: 1 Yes 2 No 9 Don’t know Silver: 1 Yes 2 No 9 Don’t know Other metals or alloy: 1 Yes 2 No 9 Don’t know IF OTHER: Specify: _________________________________
Over your lifetime (at least 100 days or more), have you ever had a JOB where you WELDED, BRAZED OR FLAME CUT METALS? 1 Yes  2 No 9 Don’t know	At what age did you FIRST weld, braze or flame cut metals? Age 	At what age did you LAST weld, braze or flame cut metals? Age 	This is a total of __ __ years. For how many of those years did you NOT weld, braze or flame cut metals? Years 	What specific metals or materials did you weld, braze or flame cut? Steel: 1 Yes 2 No 9 Don’t know Iron, copper or aluminum 1 Yes 2 No 9 Don’t know Brass or bronze 1 Yes 2 No 9 Don’t know Lead 1 Yes 2 No 9 Don’t know Other metals or alloy: 1 Yes 2 No 9 Don’t know IF OTHER: Specify: _________________________________
Over your lifetime (at least 100 days or more), have you ever had a JOB where you were exposed to METAL DUST OR METAL FUMES? 1 Yes  2 No 9 Don’t know	At what age were you FIRST exposed to metal dust of metal fumes? Age 	At what age were you LAST exposed to metal dust of metal fumes? Age 	This is a total of __ __ years. For how many of those years were you NOT exposed to metal dust of metal fumes? Years 	To which specific metal dust or metal fumes were you exposed? Steel: 1 Yes 2 No 9 Don’t know Iron, copper or aluminum 1 Yes 2 No 9 Don’t know Brass or bronze 1 Yes 2 No 9 Don’t know Lead 1 Yes 2 No 9 Don’t know Other metals or alloy: 1 Yes 2 No 9 Don’t know IF OTHER: Specify: _________________________________

OTHER OCCUPATIONAL EXPOSURE

Over your lifetime (at least 100 days or more), have you ever had a JOB where you worked with ANY OTHER CHEMICAL? 1 Yes  2 No 9 Don’t know IF YES: Please specify: ___________________________ ___________________________ ____________________________	At what age did you FIRST work with this chemical? Age 	At what age did you LAST work with this chemical? Age 	This is a total of __ __ years. For how many of those years did you NOT use this chemical? Years 
Over your lifetime (at least 100 days or more), have you ever had a JOB where you worked with ANY OTHER CHEMICAL? 1 Yes  2 No 9 Don’t know IF YES: Please specify: ___________________________ ___________________________ ____________________________	At what age did you FIRST work with this chemical? Age 	At what age did you LAST work with this chemical? Age 	This is a total of __ __ years. For how many of those years did you NOT use this chemical? Years 

SURVEY 10: HOME PESTICIDE USE

The following questions are about chemicals or home pesticides that you used to kill insects, plants, weeds, mold or mildew, or other pests in or around any house or apartment where you lived. We are interested only in those products that you personally handled, either by preparing them prior to application, by applying them yourself, or by helping to clean up after they were applied. Please consider products that you have personally handled at any time in your life.

Please consider only the time from 10 years of age to the present.

Have you ever personally handled insecticides to control insects and pests in your home? 1 Yes  2 No 9 Don’t know	At what age did you first handle insecticides in the home? Age 	At what age did you last handle insecticides in the home? Age 	This is a total of __ __ years. For how many of those years did you not handle insecticides in your home? Age 	During the periods when you did use insecticides in the home, how many days per year did you use them?  days per year
Have you ever personally handled insecticides to control insects and pests in your lawn or garden? 1 Yes  2 No 9 Don’t know	At what age did you first handle insecticides in the lawn or garden? Age 	At what age did you last handle insecticides in the lawn or garden? Age 	This is a total of __ __ years. For how many of those years did you not handle insecticides in the lawn or garden? Age 	During the periods when you did use insecticides in the lawn or garden, how many days per year did you use them?  days per year
Have you ever used herbicides or weed killers to control weeds or plants in your lawn, garden, or other areas around the home? 1 Yes  2 No 9 Don’t know	At what age did you first handle herbicides in the lawn or garden? Age 	At what age did you last handle herbicides in the lawn or garden? Age 	This is a total of __ __ years. For how many of those years did you not use herbicides in the lawn or garden? Age 	During the periods when you did use herbicides in the lawn or garden, how many days per year did you use them?  days per year

Have you ever used fungicides to control mildew or rot in your home or plant mold in the garden? 1 Yes  2 No 9 Don’t know	At what age did you first handle fungicides in the home or garden? Age 	At what age did you last handle fungicides in the home or garden? Age 	This is a total of __ __ years. For how many of those years did you not use fungicides? Age 	During the periods when you did use fungicides in the home or garden, how many days per year did you use them?  days per year
Have you ever personally applied chemical soaps, shampoos, dips or powders to kill fleas, ticks or other insects on a pet, such as a dog or a cat? 1 Yes  2 No 9 Don’t know	At what age did you first apply these substances to your pet(s)? Age 	At what age did you last apply these substances to your pet(s)? Age 	This is a total of __ __ years. For how many of those years did you not apply these substances to your pets? Age 	During the periods when you did use these substances, how many days per year did you apply them to your pet(s)?  days per year

SURVEY 11: HOBBIES

The following questions are about home activities and hobbies you have performed on a regular basis, that is, for at least one hour each month for at least one year or more. Please consider only the time from when you were 10 years old to the present.

Have you ever done leather work (such as making belts, purses etc.)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do leather work? Age 	At what age did you LAST do leather work? Age 	This is a total of __ __ years. For how many of those years did you NOT do leather work? Years 	During the period when you did leather work, how many hours each month did you perform the activity?  hours/month
Have you ever lead glazed pottery or other ceramics? 1 Yes  2 No 9 Don’t know	At what age did you FIRST glaze pottery or other ceramics? Age 	At what age did you LAST glaze pottery or other ceramics? Age 	This is a total of __ __ years. For how many of those years did you NOT glaze pottery or other ceramics? Years 	During the period when you did glaze pottery or other ceramics, how many hours each month did you perform the activity?  hours/month
Have you ever painted pictures or furniture with oil-based paint? 1 Yes  2 No 9 Don’t know	At what age did you FIRST paint pictures or furniture with oil-based paint? Age 	At what age did you LAST paint pictures or furniture with oil-based paint? Age 	This is a total of __ __ years. For how many of those years did you NOT paint pictures or furniture with oil-based paint? Years 	During the period when you did paint pictures or furniture with oil-based paint, how many hours each month did you perform the activity?  hours/month
Have you ever done home remodeling projects that involved scraping, stripping, burning and sanding paint? Please count only houses built before 1960. 1 Yes  2 No 9 Don’t know	At what age did you FIRST do home remodeling projects that involved scraping, stripping, burning and sanding paint on houses built before 1960? Age 	At what age did you LAST do home remodeling projects that involved scraping, stripping, burning and sanding paint on houses built before 1960? Age 	This is a total of __ __ years. For how many of those years did you NOT do home remodeling projects that involved scraping, stripping, burning and sanding paint on houses built before 1960? Years 	During the period when you did home remodeling projects that involved scraping, stripping, burning and sanding paint on houses built before 1960, how many hours each month did you perform the activity?  hours/month

Have you ever done woodworking? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do woodworking? Age 	At what age did you LAST do woodworking? Age 	This is a total of __ __ years. For how many of those years did you NOT do woodworking? Years 	During the period when you did woodworking, how many hours each month did you perform the activity?  hours/month
Have you ever painted, repaired or restored old cars, other than fixing a flat tire or changing oil? 1 Yes  2 No 9 Don’t know	At what age did you FIRST paint, repair or restore old cars, other than fixing a flat tire or changing oil? Age 	At what age did you LAST paint, repair or restore old cars, other than fixing a flat tire or changing oil? Age 	This is a total of __ __ years. For how many of those years did you NOT paint, repair or restore old cars, other than fixing a flat tire or changing oil? Years 	During the period when you did paint, repair or restore old cars, other than fixing a flat tire or changing oil, how many hours each month did you perform the activity?  hours/month
Have you ever built wooden or plastic models using glue? 1 Yes  2 No 9 Don’t know	At what age did you FIRST build wooden or plastic models using glue? Age 	At what age did you LAST build wooden or plastic models using glue? Age 	This is a total of __ __ years. For how many of those years did you NOT build wooden or plastic models using glue? Years 	During the period when you did build wooden or plastic models using glue, how many hours each month did you perform the activity?  hours/month
Have you ever developed photographs? 1 Yes  2 No 9 Don’t know	At what age did you FIRST develop photographs? Age 	At what age did you LAST develop photographs? Age 	This is a total of __ __ years. For how many of those years did you NOT develop photographs? Years 	During the period when you did develop photographs, how many hours each month did you perform the activity?  hours/month
Have you ever done gardening? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do gardening? Age 	At what age did you LAST do gardening? Age 	This is a total of __ __ years. For how many of those years did you NOT do gardening? Years 	During the period when you did gardening, how many hours each month did you perform the activity?  hours/month

Have you done soldering, welding, or metal work (such as sculpting, garden structures, etc.)? 1 Yes  2 No 9 Don’t know	At what age did you FIRST solder, weld, or do metal work? Age 	At what age did you LAST solder, weld, or do metal work? Age 	This is a total of __ __ years. For how many of those years did you NOT solder, weld, or do metal work? Years 	During the period when you did solder, weld, or do metal work, how many hours each month did you perform the activity?  hours/month
Have you ever done outdoor hunting or shooting with guns, including animals, skeet, trap or targets? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do outdoor hunting or shooting with guns, including animals, skeet, trap or targets? Age 	At what age did you LAST do outdoor hunting or shooting with guns, including animals, skeet, trap or targets? Age 	This is a total of __ __ years. For how many of those years did you NOT do outdoor hunting or shooting with guns, including animals, skeet, trap or targets? Years 	During the period when you did outdoor hunting or shooting with guns, including animals, skeet, trap or targets, how many hours each year did you perform the activity?  hours/year
Have you ever done gun shooting in an indoor pistol or rifle range? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do gun shooting in an indoor pistol or rifle range? Age 	At what age did you LAST do gun shooting in an indoor pistol or rifle range? Age 	This is a total of __ __ years. For how many of those years did you NOT do gun shooting in an indoor pistol or rifle range? Years 	During the period when you did gun shooting in an indoor pistol or rifle range, how many hours each month did you perform the activity?  hours/month
Have you ever done casting of bullets or reloading of ammunition? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do casting of bullets or reloading of ammunition? Age 	At what age did you LAST do casting of bullets or reloading of ammunition? Age 	This is a total of __ __ years. For how many of those years did you NOT do casting of bullets or reloading of ammunition? Years 	During the period when you did casting of bullets or reloading of ammunition, how many hours each month did you perform the activity?  hours/month

Have you ever done fishing using lead weights or sinkers? 1 Yes  2 No 9 Don’t know	At what age did you FIRST do fishing using lead weights or sinkers? Age 	At what age did you LAST do fishing using lead weights or sinkers? Age 	This is a total of __ __ years. For how many of those years did you NOT do fishing using lead weights or sinkers? Years 	During the period when you did fishing using lead weights or sinkers, how many hours each month did you perform the activity?  hours/month
Have you ever done any other HOBBY, such as knitting, making jewelry? Please DO NOT consider physical activity, electronic games, writing as hobbies. 1 Yes  2 No 9 Don’t know If Yes, please specify hobby: ________________________	At what age did you FIRST do this HOBBY? Age 	At what age did you LAST do this HOBBY? Age 	This is a total of __ __ years. For how many of those years did you NOT do this HOBBY? Years 	During the period when you did this HOBBY, how many hours each month did you perform the activity?  hours/month
Have you ever done any other HOBBY such as knitting, making jewelry? Please DO NOT consider physical activity, electronic games, writing as hobbies. 1 Yes  2 No 9 Don’t know If Yes, please specify hobby: ________________________	At what age did you FIRST do this HOBBY? Age 	At what age did you LAST do this HOBBY? Age 	This is a total of __ __ years. For how many of those years did you NOT do this HOBBY? Years 	During the period when you did this HOBBY, how many hours each month did you perform the activity?  hours/month

SURVEY 12: HORMONAL AND REPRODUCTIVE HISTORY (WOMEN ONLY)

The following questions are about your menstrual periods.

How old were you when you had your first menstrual period? Age 

Have you had at least one menstrual period in the past 12 months? Please do not include bleedings caused by medical conditions, hormone therapy, or surgeries. 1 Yes 2 No  9 Don’t know

IF NO What is the reason that you have not had a period in the past 12 months? 1 Pregnancy 2 Breast feeding 3 Menopause/Hysterectomy 4 Medical conditions/Treatments 5 Other: Please specify ______________________________ 9 Don’t know

How old were you when you had your LAST menstrual period? Age 

The next questions are about your pregnancy and childbirth history.

Have you ever been pregnant? 1 Yes  2 No 9 Don’t know

IF YES How many times have you been pregnant? Please count all pregnancies including, live births, miscarriages, stillbirths, tubal pregnancies or abortions) Number of pregnancies 

Are you currently pregnant? 1 Yes 2 No 9 Don’t know

How many deliveries resulted in a live birth? Number of live births 

How old were you at the time of your FIRST live birth? Age 

How old were you at the time of your LAST live birth? Age 

SURVEY 18: SPORTS HISTORY

SPORTS SURVEY
1. Have you ever participated in organized sports? 1 Yes 2 No 9 Don’t know If No or Don’t know, END survey	NOTE: Organized sports are those that are played within a school or league setting. This does not include casual playing at home or in your community.
ORGANIZED FOOTBALL: Q2-Q6
2. Did you play organized football? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 7	2a. At what age did you FIRST start playing football? Age	2b. At what age did you LAST play football? Age
3. Did you play football professionally or semi-professionally? (Note: this does not include college football) 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 4	3a. At what age did you FIRST start playing professional or semi-professional football? Age	3b. At what age did you LAST play professional or semi-professional football? Age	3c. In what league did you play while playing football professionally or semi-professionally? (Select all that apply) 1 NFL 2 AFL 3 CFL 4 NFL Europe 5 Arena League 6 XFL 7 Other: _________ 9 Don’t know *Specify other

3d. While playing professional or semi-professional football what did you play? 1 Offense 2 Defense 3 Special Teams 9 Don’t know If Don’t know, skip to Question 4

3di. Answer if you played an OFFENSIVE position. What primary offensive position did you play while playing professional or semi-professional football? 1 Tackle 2 Guard 3 Center 4 Tight End 5 Other Offensive Linemen 6 Quarterback 7 Half Back 8 Full Back 9 Running Back 1 0 Slot Back 1 1 Wide Receiver 12 Other:_________ 9 9 Don’t know *Specify other

3dii. Answer if you played a DEFENSIVE position. What primary defensive position did you play while playing professional or semi-professional football? 1 Defensive Tackle 2 Defensive Guard 3 Nose Guard 4 Nose Tackle 5 Other Defensive Linemen 6 Middle Linebacker 7 Strong Side Linebacker 8 Weak Side Linebacker 9 Outside Linebacker 1 0 Other Linebacker 1 1 Cornerback 12 Safety 1 3 Strong Safety 1 4 Free Safety 1 5 Other Defensive Back 16 Other:_________ 9 9 Don’t know *Specify other

3diii. Answer if you played a SPECIAL TEAMS position. What primary special teams position did you play while playing professional or semi-professional football? 1 Punter 2 Kicker 3 Kick Returner 4 Gunner 5 Wedge Buster 6 Return Blocker 7 Kick Coverage 8 FT/PAT Lineman 9 Other: _________ 99 Don’t know *Specify other

4. Did you play football in college? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 5	4a. At what age did you FIRST start playing college football? Age	4b. At what age did you LAST college football? Age	4c. In what league did you play while playing college football? (Select all that apply) 1 Division I/FBS 2 Division II/FCS 3 Division II 4 Division III 5 NAIA 6 Other: ________ 9 Don’t know *Specify other
4d. While playing college football what did you play? 1 Offense 2 Defense 3 Special Teams 9 Don’t know If Don’t know, skip to Question 5	4di. Answer if you played an OFFENSIVE position. What primary offensive position did you play while playing college football? 1 Tackle 2 Guard 3 Center 4 Tight End 5 Other Offensive Linemen 6 Quarterback 7 Half Back 8 Full Back 9 Running Back 1 0 Slot Back 1 1 Wide Receiver 12 Other:_________ 9 Don’t know *Specify other	4dii. Answer if you played a DEFENSIVE position. What primary defensive position did you play while playing college football? 1 Defensive Tackle 2 Defensive Guard 3 Nose Guard 4 Nose Tackle 5 Other Defensive Linemen 6 Middle Linebacker 7 Strong Side Linebacker 8 Weak Side Linebacker 9 Outside Linebacker 1 0 Other Linebacker 1 1 Cornerback 12 Safety 1 3 Strong Safety 1 4 Free Safety 1 5 Other Defensive Back 16 Other:_________ 9 Don’t know *Specify other	4diii. Answer if you played a SPECIAL TEAMS position. What primary special teams position did you play while playing college football? 1 Punter 2 Kicker 3 Kick Returner 4 Gunner 5 Wedge Buster 6 Return Blocker 7 Kick Coverage 8 FT/PAT Lineman 9 Other: _________ 9 Don’t know *Specify other
5. Did you play football in high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 6	5a. At what age did you FIRST start playing high school football? Age	5b. At what age did you LAST high school football? Age
5c. While playing high school football what did you play? 1 Offense 2 Defense 3 Special Teams 9 Don’t know If Don’t know, skip to Question 6	5ci. Answer if you played an OFFENSIVE position. What primary offensive position did you play while playing high school football? 1 Tackle 2 Guard 3 Center 4 Tight End 5 Other Offensive Linemen 6 Quarterback 7 Half Back 8 Full Back 9 Running Back 1 0 Slot Back 1 1 Wide Receiver 12 Other:_________ 9 9 Don’t know *Specify other	5cii. Answer if you played a DEFENSIVE position. What primary defensive position did you play while playing high school football? 1 Defensive Tackle 2 Defensive Guard 3 Nose Guard 4 Nose Tackle 5 Other Defensive Linemen 6 Middle Linebacker 7 Strong Side Linebacker 8 Weak Side Linebacker 9 Outside Linebacker 1 0 Other Linebacker 1 1 Cornerback 12 Safety 1 3 Strong Safety 1 4 Free Safety 1 5 Other Defensive Back 16 Other:_________ 9 9 Don’t know *Specify other	5ciii. Answer if you played a SPECIAL TEAMS position. What primary special teams position did you play while playing high school football? 1 Punter 2 Kicker 3 Kick Returner 4 Gunner 5 Wedge Buster 6 Return Blocker 7 Kick Coverage 8 FT/PAT Lineman 9 Other: ___________________ 9 9 Don’t know *Specify other

6. Did you play football prior to high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 7	6a. At what age did you FIRST start playing football prior to high school? Age	6b. At what age did you LAST start playing football prior to high school? Age
6c. While playing football prior to high school what did you play? 1 Offense 2 Defense 3 Special Teams 9 Don’t know If Don’t know, skip to Question 7	6ci. Answer if you played an OFFENSIVE position. What primary offensive position did you play while playing high school football? 1 Tackle 2 Guard 3 Center 4 Tight End 5 Other Offensive Linemen 6 Quarterback 7 Half Back 8 Full Back 9 Running Back 1 0 Slot Back 1 1 Wide Receiver 12 Other:_________ 9 9 Don’t know *Specify other	6cii. Answer if you played a DEFENSIVE position. What primary defensive position did you play while playing high school football? 1 Defensive Tackle 2 Defensive Guard 3 Nose Guard 4 Nose Tackle 5 Other Defensive Linemen 6 Middle Linebacker 7 Strong Side Linebacker 8 Weak Side Linebacker 9 Outside Linebacker 1 0 Other Linebacker 1 1 Cornerback 12 Safety 1 3 Strong Safety 1 4 Free Safety 1 5 Other Defensive Back 16 Other:_________ 9 9 Don’t know *Specify other	6ciii. Answer if you played a SPECIAL TEAMS position. What primary special teams position did you play while playing high school football? 1 Punter 2 Kicker 3 Kick Returner 4 Gunner 5 Wedge Buster 6 Return Blocker 7 Kick Coverage 8 FT/PAT Lineman 9 Other: __________________ 9 9 Don’t know *Specify other

ORGANIZED HOCKEY: Q7-Q12
7. Did you play organized hockey? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 14	7a. At what age did you FIRST start playing hockey? Age	7b. At what age did you LAST play hockey? Age
8. Did you play hockey professionally? (Note: this ONLY refers to playing in the NHL, AHL, or ECHL) 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 9	8a. At what age did you FIRST start playing professional hockey? Age	8b. At what age did you LAST play professional hockey? Age	8c. In what league did you play while playing professional hockey? (Select all that apply) 1 NHL 2 AHL 3 ECHL 4 Other: _________ *Specify other
8d. What primary position did you play while playing professional hockey? 1 Lt Wing 2 Rt Wing 3 Wing 4 Forward 5 Center 6 Lt Defensemen 7 Rt Defensemen 8 Defensemen 9 Goalie 1 0 Other: ___________________ 99 Don’t know *Specify other	8e. Were you ever an enforcer while playing professional hockey? 1 Yes 2 No 9 Don’t know

9. Did you play hockey semi-professionally or at the junior level? (Note: this does NOT include college or high school teams) 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 10	9a. At what age did you FIRST start playing semi-professional or junior level hockey? Age	9b. At what age did you LAST play semi-professional or junior level hockey? Age
9c. What primary position did you play while playing hockey semi-professionally or at the junior level? 1 Lt Wing 2 Rt Wing 3 Wing 4 Forward 5 Center 6 Lt Defensemen 7 Rt Defensemen 8 Defensemen 9 Goalie 1 0 Other: _________ 99 Don’t know *Specify other	9d. Were you ever an enforcer while playing hockey semi-professionally or at the junior level? 1 Yes 2 No 9 Don’t know

10. Did you play hockey in college? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 11	10a. At what age did you FIRST start playing college hockey? Age *Please do not include years possibly covered by time playing semi-professional or junior level hockey	10b. At what age did you LAST play college hockey? Age *Please do not include years possibly covered by time playing semi-professional or junior level hockey	10c. In what league did you play while playing college hockey? (Select all that apply) 1 Division I 2 Division II 3 Division III 4 N AIA 5 Other: _________ 9 Don’t know *Specify other
10d. What primary position did you play while playing college hockey? 1 Lt Wing 2 Rt Wing 3 Wing 4 Forward 5 Center 6 Lt. Defensemen 7 Rt. Defensemen 8 Defensemen 9 Goalie 1 0 Other: ___________________ 9 9 Don’t know *Specify other	10e. Were you ever an enforcer while playing college hockey? 1 Yes 2 No 9 Don’t know

11. Did you play hockey in high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 12	11a. At what age did you FIRST start playing high school hockey? Age Please include post-graduate year if applicable, but not time played at any previously mentioned level.	11b. At what age did you LAST play high school hockey? Age Please include post-graduate year if applicable, but not time played at any previously mentioned level.	11c. What primary position did you play while playing high school hockey? 1 Lt Wing 2 Rt Wing 3 Wing 4 Forward 5 Center 6 Lt Defensemen 7 Rt Defensemen 8 Defensemen 9 Goalie 1 0 Other: ____________________ 9 9 Don’t know *Specify other
12. Did you play hockey prior to high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 13	12a. At what age did you FIRST start playing hockey prior to high school? Age Please include post-graduate year if applicable, but not time played at any previously mentioned level.	12b. At what age did you LAST start playing hockey prior to high school? Age Please include post-graduate year if applicable, but not time played at any previously mentioned level.	12c. What primary position did you play while playing hockey prior to high school? 1 Lt Wing 2 Rt Wing 3 Wing 4 Forward 5 Center 6 Lt Defensemen 7 Rt Defensemen 8 Defensemen 9 Goalie 1 0 Other: __________________ 99 Don’t know *Specify other

ORGANIZED BOXING: Q13-Q15
13. Were you ever a boxer? 1 Yes  2 No 9 Don’t know Note: That boxer refers ONLY to professional or amateur boxing in which you competed in refereed bouts. If No or Don’t know, skip to Question 16	13a. At what age did you FIRST start boxing? Age	13b. At what age did you LAST box? Age
14. Did you ever box professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 15	14a. How many total bouts or matches did you compete in while boxing professionally?	14b. In what weight class did you compete while boxing professionally? 1 Heavyweight 2 Cruiserweight/junior heavyweight 3 Light heavyweight 4 Super middleweight 5 Middleweight 6 Super welterweight, junior/light middleweight 7 Welterweight 8 Super lightweight or junior/light welterweight 9 Lightweight 1 0 Super featherweight/junior lightweight 1 1 Featherweight 1 2 Super bantamweight/junior featherweight 1 3 Bantamweight 1 4 Super flyweight/junior bantamweight 1 5 Flyweight 1 6 Light flyweight/junior flyweight 1 7 Minimumweight/mini flyweight/strawweight 18 Light minimumweight/Atomweight 1 9 Other: ______________________ 99 Don’t know *Specify other

15. Did you ever box as an amateur? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 16

15a. How many total bouts or matches did you compete in while boxing as an amateur?

15b. In what weight class did you compete while boxing as an amateur? 1 Heavyweight 2 Cruiserweight/junior heavyweight 3 Light heavyweight 4 Super middleweight 5 Middleweight 6 Super welterweight, junior/light middleweight 7 Welterweight 8 Super lightweight or junior/light welterweight 9 Lightweight 1 0 Super featherweight/junior lightweight 1 1 Featherweight 1 2 Super bantamweight/junior featherweight 1 3 Bantamweight 1 4 Super flyweight/junior bantamweight 1 5 Flyweight 1 6 Light flyweight/junior flyweight 1 7 Minimum weight/mini flyweight/straw weight 18 Light minimumweight/Atomweight 1 9 Other: ______________________ 99 Don’t know *Specify other

ORGANIZED SOCCER: Q16-Q
16. Did you ever play organized soccer? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 22	16a. At what age did you FIRST start playing soccer? Age	16b. At what age did you LAST play soccer? Age
17. Did you play soccer professionally or semi-professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 18	17a. At what age did you FIRST start playing soccer professionally or semi-professionally? Age	17b. At what age did you LAST play soccer professionally or semi-professionally? Age
17c. In what league(s) did you play while playing soccer professionally or semi-professionally? 1 North American 2 South American 3 European  4 Asian/Australian  5 African  6 Other: _______ 9 Don’t know *Specify other	17ci. Please specify the league(s) you played professional soccer. NA: ________________ SA: ________________ Euro: _______________ A&A: _______________ Afr: ________________ Other: ______________	17d. What was the primary position you held while playing soccer professionally or semi-professionally? 1 Defender 2 Center-back 3 Sweeper 4 Full-back/Lt-back/Rt-back 5 Wingback 6 Midfielder 7 Winger/Lt midfield/Rt midfield 8 Defensive midfielder 9 Attacking midfielder 1 0 Forward 1 1 Striker 1 2 Goalie 13 Other: ______________________ 99 Don’t know *Specify other

18. Did you play college soccer? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 19	18a. At what age did you FIRST start playing college soccer? Age	18b. At what age did you LAST play college soccer? Age
18c. In what league did you play while playing college soccer? 1 Division I 2 Division II 3 Division III 4 NAIA 5 O ther: _______ 9 Don’t know *Specify other	18d. What was the primary position you held while playing college soccer? 1 Defender 2 Center-back 3 Sweeper 4 Full-back/Lt-back/Rt-back 5 Wingback 6 Midfielder 7 Winger/Lt midfield/Rt midfield 8 Defensive midfielder 9 Attacking midfielder 1 0 Forward 1 1 Striker 1 2 Goalie 1 3 Other: ______________________ 99 Don’t know *Specify other

19. Did you play soccer in high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 20	19a. At what age did you FIRST start playing soccer in high school? Age	19b. At what age did you LAST play soccer in high school? Age
19c. What was the primary position you held while playing soccer in high school? 1 Defender 2 Center-back 3 Sweeper 4 Full-back/Lt-back/Rt-back 5 Wingback 6 Midfielder 7 Winger/Lt midfield/Rt midfield 8 Defensive midfielder 9 Attacking midfielder 1 0 Forward 1 1 Striker 1 2 Goalie 1 3 Other: ______________________ 99 Don’t know *Specify other

20. Did you play soccer prior to high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 21	20a. At what age did you FIRST start playing soccer prior to high school? Age		20b. At what age did you LAST play soccer prior to high school? Age
20c. What was the primary position you held while playing soccer prior to high school? 1 Defender 2 Center-back 3 Sweeper 4 Full-back/Lt-back/Rt-back 5 Wingback 6 Midfielder 7 Winger/Lt midfield/Rt midfield 8 Defensive midfielder 9 Attacking midfielder 1 0 Forward 1 1 Striker 1 2 Goalie 1 3 Other: ______________________ 99 Don’t know *Specify other

21. Did you play soccer at another level? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 22	21a. At what age did you FIRST start playing soccer at another level? Age		21b. At what age did you LAST play soccer at another level? Age
21c. What was the primary position you held while playing soccer at another level? 1 Defender 2 Center-back 3 Sweeper 4 Full-back/Lt-back/Rt-back 5 Wingback 6 Midfielder 7 Winger/Lt midfield/Rt midfield 8 Defensive midfielder 9 Attacking midfielder 1 0 Forward 1 1 Striker 1 2 Goalie 13 Other: ______________________ 99 Don’t know *Specify other

OTHER ORGANIZED SPORT (A): Q22-Q28
22. Did you play any other organized sports? 1 Yes  2 No 9 Don’t know If No or Don’t know, END SURVEY.	22a. What was your next, major, organized sport played?
	1 Amateur Wrestling 2 Auto Racing 3 Bandy 4 Baseball 5 Basketball 6 Bodybuilding 7 Bowling 8 Bull Riding 9 Distance Running 1 0 Crew 1 1 Cross County 1 2 Cycling 1 3 Decathlon 1 4 Diving 1 5 Equestrian 1 6 Field Hockey 1 7 Flag Football 18 Floor Hockey ­ ­19 Golf 2 0 Gymnastics 2 1 Horse Jumping 2 2 Ice Skating 2 3 Inline Skating 24 Karate ­ ­25 Kickball *Specify other		2 6 Lacrosse 27 Martial Arts 2 8 Mixed Martial Arts (MMA) 2 9 Motorcycle Racing 3 0 Mountaineering 31 Parachuting 3 2 Pentathlon 3 3 Power Lifting 3 4 Entertainment Wrestling 3 5 Racquetball 3 6 Roller Hockey 3 7 Rugby 3 8 Skiing 3 9 Snowboarding 4 0 Softball 4 1 Squash 4 2 Strongman 43 Swimming ­ ­44 Tennis 4 5 Track and Field 4 6 Triathlon 4 7 Ultimate Frisbee 4 8 Water Polo 49 Water Skiing ­ ­50 Other: _________________
22b. At what age did you FIRST start playing this organized sport? Age	22c. At what age did you LAST play this organized sport? Age

23. Did you play this organized sport professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 24	23a. How many years did you play this organized sport professionally? Years	23b. What was the primary position you played while playing this organized sport professionally? *If the sport does not have positions please respond N/A
24. Did you play this organized sport semi-professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 25	24a. How many years did you play this organized sport semi-professionally? Years	24b. What was the primary position you played while playing this organized sport semi-professionally? *If the sport does not have positions please respond N/A
25. Did you play this organized sport in college? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 26	25a. How many years did you play this organized sport in college? Years	25b. What was the primary position you played while playing this organized sport in college? *If the sport does not have positions please respond N/A
26. Did you play this organized sport in high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 27	26a. How many years did you play this organized sport in high school? Years	26b. What was the primary position you played while playing this organized sport in high school? *If the sport does not have positions please respond N/A

27. Did you play this organized sport before high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 28	27a. How many years did you play this organized sport before high school? Years	27b. What was the primary position you played while playing this organized sport before high school? *If the sport does not have positions please respond N/A
28. Did you play this organized sport at another level? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 29	28a. How many years did you play this organized sport at another level? Please specify the level: ___________________ Years	28b. What was the primary position you played while playing this organized sport before high school? *If the sport does not have positions please respond N/A

OTHER ORGANIZED SPORT (B): Q29-Q35
29. Did you play any other organized sports? 1 Yes  2 No 9 Don’t know If No or Don’t know, END SURVEY.	29a. What was your next, major, organized sport played?
	1 Amateur Wrestling 2 Auto Racing 3 Bandy 4 Baseball 5 Basketball 6 Bodybuilding 7 Bowling 8 Bull Riding 9 Distance Running 1 0 Crew 1 1 Cross County 1 2 Cycling 1 3 Decathlon 1 4 Diving 1 5 Equestrian 1 6 Field Hockey 1 7 Flag Football 18 Floor Hockey ­ ­19 Golf 2 0 Gymnastics 2 1 Horse Jumping 2 2 Ice Skating 2 3 Inline Skating 24 Karate ­ ­25 Kickball *Specify other		2 6 Lacrosse 27 Martial Arts 2 8 Mixed Martial Arts (MMA) 2 9 Motorcycle Racing 3 0 Mountaineering 31 Parachuting 3 2 Pentathlon 3 3 Power Lifting 3 4 Entertainment Wrestling 3 5 Racquetball 3 6 Roller Hockey 3 7 Rugby 3 8 Skiing 3 9 Snowboarding 4 0 Softball 4 1 Squash 4 2 Strongman 43 Swimming ­ ­44 Tennis 4 5 Track and Field 4 6 Triathlon 4 7 Ultimate Frisbee 4 8 Water Polo 49 Water Skiing ­ ­50 Other: _________________
29b. At what age did you FIRST start playing this organized sport? Age	29c. At what age did you LAST play this organized sport? Age

30. Did you play this organized sport professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 31	30a. How many years did you play this organized sport professionally? Years	30b. What was the primary position you played while playing this organized sport professionally? *If the sport does not have positions please respond N/A
31. Did you play this organized sport semi-professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 32	31a. How many years did you play this organized sport semi-professionally? Years	31b. What was the primary position you played while playing this organized sport semi-professionally? *If the sport does not have positions please respond N/A
32. Did you play this organized sport in college? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 33	32a. How many years did you play this organized sport in college? Years	32b. What was the primary position you played while playing this organized sport in college? *If the sport does not have positions please respond N/A
33. Did you play this organized sport in high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 34	33a. How many years did you play this organized sport in high school? Years	33b. What was the primary position you played while playing this organized sport in high school? *If the sport does not have positions please respond N/A

34. Did you play this organized sport before high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 35	34a. How many years did you play this organized sport before high school? Years	34b. What was the primary position you played while playing this organized sport before high school? *If the sport does not have positions please respond N/A
35. Did you play this organized sport at another level? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 36	35a. How many years did you play this organized sport at another level? Please specify the level: ___________________ Years	35b. What was the primary position you played while playing this organized sport before high school? *If the sport does not have positions please respond N/A

OTHER ORGANIZED SPORT (C): Q36-Q42
36. Did you play any other organized sports? 1 Yes  2 No 9 Don’t know If No or Don’t know, END SURVEY	36a. What was your next, major, organized sport played?
	1 Amateur Wrestling 2 Auto Racing 3 Bandy 4 Baseball 5 Basketball 6 Bodybuilding 7 Bowling 8 Bull Riding 9 Distance Running 1 0 Crew 1 1 Cross County 1 2 Cycling 1 3 Decathlon 1 4 Diving 1 5 Equestrian 1 6 Field Hockey 1 7 Flag Football 18 Floor Hockey ­ ­19 Golf 2 0 Gymnastics 2 1 Horse Jumping 2 2 Ice Skating 2 3 Inline Skating 24 Karate ­ ­25 Kickball *Specify other		2 6 Lacrosse 27 Martial Arts 2 8 Mixed Martial Arts (MMA) 2 9 Motorcycle Racing 3 0 Mountaineering 31 Parachuting 3 2 Pentathlon 3 3 Power Lifting 3 4 Entertainment Wrestling 3 5 Racquetball 3 6 Roller Hockey 3 7 Rugby 3 8 Skiing 3 9 Snowboarding 4 0 Softball 4 1 Squash 4 2 Strongman 43 Swimming ­ ­44 Tennis 4 5 Track and Field 4 6 Triathlon 4 7 Ultimate Frisbee 4 8 Water Polo 49 Water Skiing ­ ­50 Other: _________________
36b. At what age did you FIRST start playing this organized sport? Age	36c. At what age did you LAST play this organized sport? Age

37. Did you play this organized sport professionally? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 38	37a. How many years did you play this organized sport professionally? Years	37b. What was the primary position you played while playing this organized sport professionally? *If the sport does not have positions please respond N/A
38. Did you play this organized sport semi-professionally? 1 Yes  2 No  9 Don’t know If No or Don’t know, skip to Question 39	38a. How many years did you play this organized sport semi-professionally? Years	38b. What was the primary position you played while playing this organized sport semi-professionally? *If the sport does not have positions please respond N/A
39. Did you play this organized sport in college? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 40	39a. How many years did you play this organized sport in college? Years	39b. What was the primary position you played while playing this organized sport in college? *If the sport does not have positions please respond N/A
40. Did you play this organized sport in high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 41	40a. How many years did you play this organized sport in high school? Years	40b. What was the primary position you played while playing this organized sport in high school? *If the sport does not have positions please respond N/A

41. Did you play this organized sport before high school? 1 Yes  2 No 9 Don’t know If No or Don’t know, skip to Question 42	41a. How many years did you play this organized sport before high school? Years	41b. What was the primary position you played while playing this organized sport before high school? *If the sport does not have positions please respond N/A
42. Did you play this organized sport at another level? 1 Yes  2 No 9 Don’t know	42a. How many years did you play this organized sport at another level? Please specify the level: ___________________ Years	42b. What was the primary position you played while playing this organized sport before high school? *If the sport does not have positions please respond N/A

5. ALS-ASSOCIATED AND CLINICAL FACTORS

SURVEY 6: FAMILY HISTORY

The following questions relate to biological family members including parents, sisters and brothers (including half siblings) and children. Please do not include adopted relatives.

1. How many biological sisters (including half-sisters) do you have, living or deceased?

 number

2. How many biological brothers (including half-brothers) do you have, living or deceased?

 number

3. How many biological children do you have, living or deceased?

 number

Please complete a few questions about each of your immediate relatives with respect to particular medical conditions they may have had. Among your biological relatives, including your parents, sisters, brothers and children, has anyone ever been diagnosed by a physician with any of the following conditions?

Relationship: Mother

1. Is your mother still living?

₁ Yes ₂ No ₉ Don’t know

2. What is your mother’s current age or age at her death?  years old

3. Has your mother ever been diagnosed by a physician with any of the following medical conditions?

Amyotrophic lateral sclerosis: ₁ Yes ₂ No ₉ Don’t know

Alzheimer’s disease: ₁ Yes ₂ No ₉ Don’t know

Parkinson’s disease: ₁ Yes ₂ No ₉ Don’t know

4. At what age was she diagnosed with the condition?

 age (ALS)  Don’t know

 age (Alzheimer’s)  Don’t know

 age (Parkinson’s)  Don’t know

Relationship: Father

1. Is your father still living?

₁ Yes ₂ No ₉ Don’t know

2. What is your father’s current age or age at his death?  years old

3. Has your father ever been diagnosed by a physician with any of the following medical conditions?

Amyotrophic lateral sclerosis: ₁ Yes ₂ No ₉ Don’t know

Alzheimer’s disease: ₁ Yes ₂ No ₉ Don’t know

Parkinson’s disease: ₁ Yes ₂ No ₉ Don’t know

4. At what age was he diagnosed with the condition?

 age (ALS)  Don’t know

 age (Alzheimer’s)  Don’t know

 age (Parkinson’s)  Don’t know

Relationship: Sibling (sister)

1. Is your sister still living?

₁ Yes ₂ No ₉ Don’t know

2. What is your sister’s current age or age at her death?  years old

3. Has your sister ever been diagnosed by a physician with any of the following medical conditions?

Amyotrophic lateral sclerosis: ₁ Yes ₂ No ₉ Don’t know

Alzheimer’s disease: ₁ Yes ₂ No ₉ Don’t know

Parkinson’s disease: ₁ Yes ₂ No ₉ Don’t know

4. At what age was she diagnosed with the condition?

 age (ALS)  Don’t know

 age (Alzheimer’s)  Don’t know

 age (Parkinson’s)  Don’t know

Relationship: Sibling (brother)

1. Is your brother still living?

₁ Yes ₂ No ₉ Don’t know

2. What is your brother’s current age or age at his death?  years old

3. Has your brother ever been diagnosed by a physician with any of the following medical conditions?

Amyotrophic lateral sclerosis: ₁ Yes ₂ No ₉ Don’t know

Alzheimer’s disease: ₁ Yes ₂ No ₉ Don’t know

Parkinson’s disease: ₁ Yes ₂ No ₉ Don’t know

4. At what age was he diagnosed with the condition?

 age (ALS)  Don’t know

 age (Alzheimer’s)  Don’t know

 age (Parkinson’s)  Don’t know

Relationship: Children

1. Relationship: ₁ Daughter ₂ Son

2. Is your child still living? ₁ Yes ₂ No ₉ Don’t know

3. What is your child’s current age or the age at his/her death?  years old

4. Has your child ever been diagnosed by a physician with any of the following medical conditions?

Amyotrophic lateral sclerosis: ₁ Yes ₂ No ₉ Don’t know

Alzheimer’s disease: ₁ Yes ₂ No ₉ Don’t know

Parkinson’s disease: ₁ Yes ₂ No ₉ Don’t know

5. At what age was he/she diagnosed with the condition?

 age (ALS)  Don’t know

 age (Alzheimer’s)  Don’t know

 age (Parkinson’s)  Don’t know

Note Survey 7 is at the end because it is the only survey taken more than once.

SURVEY 17: FIRST NOTICED SYMPTOMS

1. When did you first notice weakness that was later diagnosed as ALS?

 /   Don’t know

MONTH YEAR

2. In what part of the body did you first notice weakness that was diagnosed as ALS?

Speech and/or swallowing muscles

Arm or hand

Neck, back or abdominal area

Leg or foot

Breathing muscles

All over my body

3. Before you noticed weakness that turned out to be ALS, did you experience any of the following?

Cramps or muscle spasms? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first experience cramps or muscle spasms?  /   Don’t know MONTH YEAR
Scattered muscle twitching? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first experience scattered muscle twitching?  /   Don’t know MONTH YEAR
Difficulty swallowing? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first experience difficulty swallowing?  /   Don’t know MONTH YEAR
Problems with speech? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first experience problems with speech?  /   Don’t know MONTH YEAR
Difficulty controlling bowels or bladder? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first experience difficulty controlling bowels or bladder?  /   Don’t know MONTH YEAR

4. The following questions are about ALS specific medications you may have taken:

4a. Have you taken the drug riluzole (Rilutek®)?

I have never taken riluzole

I used to take riluzole but discontinued it

I am currently taking riluzole

Don’t know

4b. Have you taken the drug edaravone (Radicava®)?

I have never taken edaravone

I used to take edaravone but discontinued it

I am currently taking edaravone

Don’t know

5. The following questions are about assistive devices or programs you may have used.

Have you ever used a power wheelchair or electric scooter? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first use a power wheelchair or electric scooter?  /   Don’t know MONTH YEAR
Have you ever used noninvasive breathing equipment, such as Bi-Pap (Bi-level Positive Airway Pressure)? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first use noninvasive breathing equipment such as Bi-Pap?  /   Don’t know MONTH YEAR
Have you ever had a tracheostomy? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you have the tracheostomy?  /   Don’t know MONTH YEAR
Have you ever used an augmentative and alternative communication device? 1 Yes  _text box_ 2 No 9 Don’t know	IF YES In what month and year did you first use an augmentative and alternative communication device?  /   Don’t know MONTH YEAR
Have you ever been enrolled in a hospice program? 1 Yes  2 No 9 Don’t know	IF YES In what month and year did you first enroll in a hospice program?  /   Don’t know MONTH YEAR

6. Since you developed ALS, have you had any of the following (mark all that apply):

Pneumonia that required treatment with prescription medication yes/no/don’t know

Falls that caused injury significant enough that you were seen by a physician yes/no/don’t know

A blood clot in an arm, leg or in the lung that required treatment with blood thinner medication yes/no/don’t know

7. Have you participated in any ALS research studies?

No/Yes

Don’t know

Would you potentially be interested in participating in ALS research studies?

No/Yes

Don’t know

8. A multidisciplinary ALS clinic is a clinic in which specialized medical care is provided at a medical facility by a team of healthcare professionals. This team may include a neurologist, nurse, physical therapist, occupational therapist, respiratory therapist, speech-language pathologist, nutritionist or dietitian and social worker.

Have you attended an ALS multidisciplinary clinic?

I have never attended a multidisciplinary ALS clinic

I currently attend a multidisciplinary ALS clinic

I previously attended a multidisciplinary ALS clinic but do not plan to attend any further visits

Don’t know

9. Which hand do/did you write with?

Right

Left

Can use either equally well

10. Do you have advance directives established, such as a living will?

No/Yes

Don’t know

11. Have you had genetic test for inherited traits that can cause ALS?

No/Yes

Don’t know

Self-Administered Rating Scale (to be completed 3 times in the first year and ever 6 months thereafter)

SURVEY 7: FUNCTIONAL CHANGES

The following rating scale is used to assess changes in physical functioning in persons with ALS and other motor neuron diseases.

The questions refer to how you are currently functioning at home. Please read each item carefully and base your answers on your functioning today compared to the time before you had any symptoms of ALS or another motor neuron disease. Please choose the answer that best fits your functional status today.

Compared with the time before you had symptoms of ALS or another motor neuron disease:

1. Have you noticed any changes in your speech?

	No change
	I have a noticeable speech difference.
	My speech has changed. I am asked often to repeat words or phrases.
	My speech has changed. I sometimes need the use of alternative communication methods (i.e. computer, writing pad, letter board or eye chart).
	I am unable to communicate verbally.

2. Have you noticed any changes (increases) in the amount of saliva in your mouth (regardless of any medication use)?

	No change
	I have slight but definite excess of saliva with or without night time drooling.
	I have moderate amounts of excessive saliva with or without minimal day time drooling.
	I have marked amounts of excessive saliva with some daytime drooling.
	I have marked excessive saliva with marked drooling requiring a constant tissue or handkerchief.

Compared with the time before you had symptoms of ALS or another motor neuron disease:

3. Have there been any changes in your ability to swallow?

	No changes for all foods and liquids
	I have some changes in swallowing or occasional choking episodes (including coughing during swallowing).
	I am unable to eat all consistencies of food and have modified the consistency of foods eaten.
	I use a feeding tube (PEG) to supplement what is eaten by mouth.
	I do not eat anything by mouth and receive all nutrition through a feeding tube (PEG).

4. Has your handwriting changed? Please choose the best answer that describes your handwriting with your dominant (usual) hand without a cuff or brace.

	No changes
	My handwriting is slower and/or sloppier but all the words are legible.
	Not all my words are legible.
	I am able to hold a pen but unable to write.
	I am unable to hold a pen.

The following question refers to your ability to cut foods and handle utensils (feed yourself).

Compared with the time before you had symptoms of ALS or another motor neuron disease:

5. How do you get most of your nutrition?

	Eat most of my meals by mouth
	Get most of my nutrition through a feeding tube (PEG)

6. Cutting food and handling utensils:

	No change
	My cutting food or handling utensils is somewhat slow and clumsy (or different than before) but I do not need assistance or adaptive equipment.
	I sometimes need help with cutting more difficult foods.
	My food must be cut by someone else but I can feed myself slowly without assistance.
	I need to be fed.

7. Using a feeding tube (PEG)

	I use a PEG without assistance or difficulty.
	I use a PEG without assistance however I may be slow and /or clumsy.
	I require assistance with closures and fasteners.
	I provide minimal assistance to a caregiver.
	I am unable to perform any of the manipulations.

Compared with the time before you had symptoms of ALS or another motor neuron disease:

8. Has your ability to dress and perform self-care activities (i.e. bathing, teeth brushing, shaving, combing your hair, other hygienic activities) changed?

	No change
	I perform self-care activities without assistance but with increased effort or decreased efficiency.
	I require intermittent assistance or use different methods (i.e. sit down to get dressed, fasten buttons with a fastener or your non-dominant hand).
	I require daily assistance.
	I do not perform self-care activities and am completely dependent on caregiver.

9. Has your ability to turn in bed and adjust the bed clothes (i.e. cover yourself with the sheet or blanket) changed?

	No change
	I can turn in bed and adjust the bed clothes without assistance but it is slower or more clumsy.
	I can turn in bed or adjust the bed clothes without assistance but with great difficulty.
	I can initiate turning in bed or adjusting the bed clothes but require assistance to complete the task.
	I am helpless in bed.

Compared with the time before you had symptoms of ALS or another motor neuron disease:

10. Has your ability to walk changed?

	No change
	My walking has changed but I do not require any assistance or devices (i.e. foot brace, cane, or walker).
	I require assistance to walk (i.e. cane, walker, foot brace or hand held assistance).
	I can move my legs or stand up but am unable to walk from room to room.
	I cannot walk or move my legs.

11. Has your ability to climb stairs changed?

	No change
	I am slower.
	I am unsteady and/or more fatigued.
	I require assistance (i.e. using the handrail, cane or person).
	I cannot climb stairs.

Compared with the time before you had symptoms of ALS or another motor neuron disease:

12. Do you experience shortness of breath or have difficulty breathing?

	No change
	I have shortness of breath only with walking.
	I have shortness of breath with minimal exertion (i.e. talking, eating, bathing or dressing).
	I have shortness of breath at rest while either sitting or lying down.
	I have significant shortness of breath (all of the time) and considering using mechanical ventilation.

13. Do you experience shortness of breath or have difficulty breathing while lying down on your back?

	No change
	I occasionally have shortness of breath while lying on back but don’t routinely use more that two (2) pillows to sleep.
	I have shortness of breath while lying on back and require more than two pillows (or an equivalent) to sleep.
	I can only sleep sitting up due to shortness of breath.
	I require the use of respiratory (breathing) support (BiPAP® or invasive ventilation via tracheostomy) to sleep and do not sleep without it.

14. Do you require respiratory (breathing) support?

	I need no respiratory support.
	I need intermittent use of BiPAP®.
	I need continuous use of BiPAP® at night.
	I need continuous use of BiPAP® at night and during the day (nearly 24 hours per day).
	I need mechanical ventilation by intubation or tracheostomy.

15. Please indicate who completed this survey:

	I completed the survey (patient).
	I completed the survey with assistance.
	I completed the survey with assistance from caregiver or family member.
	The caregiver completed the survey alone.

16. What is your current weight? __ __ __ lbs

17. Have you been hospitalized in the past 6 months? Yes No

18. If yes, how many times were you in the hospital? __ __ number of times

19. How many days were you hospitalized? __ __ total number of days

20. Have you gone to the Emergency Room in the past 6 months? Yes No

21. If yes, how many times have you visited the Emergency Room? __ __ number of times

SURVEY16: OPEN ENDED QUESTIONS

1. Please enter your ideas or thoughts regarding the factors that may have caused your ALS.

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2. Please enter any ideas about factors that may cause ALS in general.

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