CEGIIR Study – Questionnaire March 01, 2010.

1.1. Interview Date: (automatically entered)1.2. Site: (automatically entered)

1.3. First Name: ______1.4. Last name: ______

1.5. Alberta Health Care #: ______1.6. Date of birth: __/ __/ ____ (dd-mm-yyyy) (drop-down for day and month)

1.7. Gender: □ Male □ Female1.8. Number of siblings (NOT adopted): Total Brothers: ______Total Sisters: _____

1.9. Postal Code: ______

1.10a. Where were you born? ___(drop-down menu)___ If Canada, Province/Territory: ___(drop-down menu)___

1.10b. Where was your father born? ___(drop-down menu)___ If Canada, Province/Territory: ___(drop-down menu)___

1.10c. Where was your mother born? ___(drop-down menu)___ If Canada, Province/Territory: ___(drop-down menu)___

Patient Information

1.11. Cultural and genetic factors can have an important influence on health, so we'd like to ask you about your background.

1.11a. Which genetic (blood-line or biological ancestry) population group(s) best describe you? (Please indicate all that apply)

□ Aboriginal (North American Indian/First Nations, Metis, or Inuit/Eskimo)

□ Arab □ Black □ Chinese □ Filipino □ Hutterite □ Japanese □ Jewish-Ashkenazi

□ Jewish-Sephardic □ Korean □ Latin American □ South Asian (e.g., East Indian, Pakistani, Sri Lankan, etc.)

□ Southeast Asian (e.g., Cambodian, Indonesian, Laotian, Vietnamese, etc.)

□ West Asian (e.g., Afghan, etc.) □ White (European Ancestry) □ Other; Please specify : ______

Patient Information(This screen is only shown if “Aboriginal” has been chosen in previous question [Question 1.11a].)

1.11a. Continue ...If Aboriginal, are you ...... ? (Please indicate all that apply)

□ Inuit (Eskimo) □ Métis □ North American Indian (First Nations) □ Treaty or Registered □ Other: ______

If North American Indian(First Nations), are youa...... ? Member of an Indian Band/First Nation?

□ Yes □ No If Yes to above: Please specify Band or First Nation: ______

Patient Information

1.11b. Is your genetic or biological ancestry the same as the ethnic group or culture you were raised in? □ Yes □ No

If no, which population group(s) best describe the culture you were raised in? (Please indicate all that apply)

□ Aboriginal, Specify if: □ Inuit (Eskimo) □ Métis □ North American Indian (First Nations) □ Arab

□ Black □ Chinese □ European ancestry, specify (e.g. English, Ukrainian, etc.): ______

□ Filipino □ Hutterite □ Japanese □ Jewish-Ashkenazi □ Jewish-Sephardic □ Korean

□ Latin American □ South Asian (e.g., East Indian, Pakistani, Sri Lankan, etc.)

□ Southeast Asian (e.g., Cambodian, Indonesian, Laotian, Vietnamese, etc.) □ West Asian (e.g., Afghan, etc.)

□ Other; Please specify: ______

Patient Information

1.12. If you or your ancestors immigrated to North America, which generation

of your family immigrated? As far as you know, was it (Please indicate all that apply)......

□ Yourself; Please specify how many years ago : ______

□ One or more parents □ One or more grandparents □ One or more great-grandparents

□ One or more ancestors from an earlier generation □ N/A (i.e. Not immigrated) □ Do not know

Patient Information

1.13a. To which ethnic or cultural group(s) did your mother's ancestors belong? (Please indicate all that apply)

□ Austrian
□ Chinese
□ Danish
□ Dutch
□ East Indian
□ English
□ Filipino / □ French
□ German
□ Hungarian (Magyar)
□ Irish
□ Italian
□ Lebanese
□ Métis / □ N. American Indian
□ Norwegian
□ Polish
□ Romanian
□ Russian
□ Scottish / □ Spanish
□ Swedish
□ Swiss
□ Ukrainian
□ Vietnamese
□ Welsh
□ American/USA - not otherwise known □ Canadian–not otherwise known □ Other; please specify: ______

Patient Information

1.13b. To which ethnic or cultural group(s) did your father’s ancestors belong? (Please indicate all that apply)

□ Austrian
□ Chinese
□ Danish
□ Dutch
□ East Indian
□ English
□ Filipino / □ French
□ German
□ Hungarian (Magyar)
□ Irish
□ Italian
□ Lebanese
□ Métis / □ N. American Indian
□ Norwegian
□ Polish
□ Romanian
□ Russian
□ Scottish / □ Spanish
□ Swedish
□ Swiss
□ Ukrainian
□ Vietnamese
□ Welsh
□ American/USA - not otherwise known
□ Canadian - not otherwise known
□ Other; Please specify: ______

Patient Information

1.14. Are you a twin (or triplet, quadruplet, etc)? □ Yes □ No

If yes, do your siblings from the same pregnancy all have same gender? □ Yes □ No

1.15. What is the highest level of education you completed? (Select ONLY one answer.)

□ None or just kindergarten

□ Less than high school; specify highest grade completed (1 to 13): ______

□ Secondary (high) school graduation certificate or equivalent

□ Beyond high school other than university with no certificate or diploma; (e.g., trade school, community college,

CEGEP, etc.) number of years beyond high school: ______

□ Trades certificate or diploma

□ Other non-university certificate or diploma (e.g., community college, CEGEP, tech institute)

□ Some university with no certificate or diploma; number of years: ______

□ University certificate or diploma below bachelor’s

□ University degree – bachelor’s □ University certificate above bachelor’s

□ Some graduate school, no degree or certificate completed; number of years: ______

□ Graduate/professional degree

1.16. Name of Doctor who you are visiting today: ___(drop-down menu)___

Patient Information : Residential History

Please list the residence in Canada or the United States you have lived at for the following scenarios: a) currently living; and b) if relevant, when you were diagnosed with Crohn’s disease or ulcerative colitis. (If you cannot remember exact details, provide your best recollection, for example, nearest cross-street or intersection.)

Current Address:

Time Period / Address
Year
Moved In / Street and Number, or Township (If you don’t remember the exact address, give the nearest intersection. / City, Town, or Municipality / County or District, if rural / Province or State
□ N/A

Residence when you were Diagnosed with Crohn’s Disease or Ulcerative Colitis: □ N/A

Time Period / Address
Year Moved In / Year Moved Out / Street and Number, or Township (If you don’t remember the exact address, give the nearest intersection. / City, Town, or Municipality / County or District, if rural / Province or State
□ N/A

Patient Information : Employment History

Please list the primary job or occupation you had for the following scenarios: a) currently; and b) if relevant, when you were diagnosed with Crohn’s disease or ulcerative colitis. Please use the occupation code provided at the end of the survey to code the most applicable occupation. Please estimate the time period if you cannot remember exact years. For each job indicate on average how long you spent commuting to and from work. If you have never been employed check here: □ N/A

Current Occupation:

Time Period / Address
Year Started Job / Occupation Code. / Job Location (city/town, postal code) / Main Job Duties / Average time in traffic per day
(use Select button to choose from a list of Occupations) / □ < 1 hour
□ > 1 hour
□ Not applicable

Occupation When you were Diagnosed with Crohn’s Disease or Ulcerative Colitis: □ N/A

Time Period / Address
Year Started Job / Year Stopped Job / Occupation Code. / Job Location (city/town, postal code) / Main Job Duties / Average time in traffic per day
(use Select button to choose from a list of Occupations) / □ < 1 hour
□ > 1 hour
□ Not applicable

(This screen is only shown if users click on Select button for Occupation Code in the previous screen)

Occupation Code

Please select one of the followings:

00UNEMPLOYED

01HOMEMAKER

02RETIRED

03SELF EMPLOYED/BUSINESS OWNER

04MD/DENTIST / SCIENTIST/RESEARCH

05LAWYER/JUDGE

06PSYCHOLOGIST/SOCIAL WORKER/MENTAL HEALTH

07COUNSELOR

08ENGINEER/COMPUTER SCIENCE

09BANKER/ACCOUNTANT

10MANAGER/CONSULTANT (E.G. PRODUCTION MANAGER)

11ADMINISTRATIVE (E.G. PERSONNEL)

12EDUCATOR

13NURSE/MEDICAL PERSONNEL

14LABORATORY TECHNICIAN

15PHYSICAL/OCCUPATIONAL/SPEECH THERAPIST

16SECRETARY/CLERC/DATA ENTRY

17RETAIL/CASHIER

18 SALES/MARKETING/INSURANCE

19 REALTOR

20WRITER/EDITOR

21ARTIST/GRAPHIC DESIGNER/CRAFTSPERSON

22MUSICIAN

23POLICE/FIRE/SECURITY/MILITARY

24FACTORY/ASSEMBLY

25MECHANIC

26RESTAURANT/FOODWORKER

27SKILLED LABOR (E.G. PLUMBER, CARPENTER, PAINTER, HAIRDRESSER)

28GENERAL LABOR (E.G. CUSTODIAN, DELIVERY, MAILMAN, TRUCKDRIVER)

29HEAVY LABOR (E.G. CONSTRUCTION, LANDSCAPING)

30CLERGY (MINISTER, PRIEST, RABBI)

31SPORTS PRO/COACH/EXERCISE INSTRUCTOR

32STUDENT

33OTHER

Family History – Disease (Clicking on underlined text will show definitions of the disease.)

Has anyone in your immediate (birth, biological, related) family ever had the following disease(s)? (Please indicate all that apply)

(*Note* Immediate Family includes the following: Father, Mother, Sister, Brother, Son, Daughter,

Father's father, Mother's father, Father's mother, Mother's mother)

Bowel Diseases
□ Celiac Disease
□ Crohn's Disease
□ Irritable Bowel Disease
□ Ulcerative Colitis
□ Ulcer Disease
□ Unknown
□ Other: ______
□ N/A / AutoImmune Diseases
□ Asthma
□ Grave Disease
□ Hypothyroidism
□ Juvenile Diabetes
□ Lupus Erythematosus
□ Multiple Sclerosis
□ Psoriasis
□ Rheumatoid Arthritis
□ Sjogren Syndrome
□ Unknown
□ Other: ______
□ N/A / Liver Diseases
□ Alcohol Cirrhosis
□ Autoimmune Hepatitis
□ Fatty Liver NASH
□ Hemochromatosis
□ Hepatitis B
□ Hepatitis C
□ Primary Biliary Cirrhosis (PBC)
□ Primary Sclerosing Cholangitis (PSC)
□ Wilson Disease
□ Alcoholism
□ Psychiatric Condition such as
Depression, Anxiety Disorder, or Bipolar Disorder
□ Unknown
□ Other: ______
□ N/A

Or, □ I am adopted, and I do not know the disease history of my biological (birth and/or blood related) family.

(Follow-up questions are shown for each selection the patient made from previous screen. E.g. if the patient has selected “Unknown Bowel Diseases”, “Unknown AutoImmune Diseases”, “Celiac Disease”, “Grave Disease”, and “AutoImmune Hepatitis”, the following 5 follow-up questions will be shown to the patient.)

Family History – Disease

2.1.1. Who in your immediate (birth, biological, related) family has ever had Unknown Bowel Diseases? (Please indicate all that apply)

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother □ Spouse/Common law

Family History – Disease

2.1.2. Who in your immediate (birth, biological, related) family has ever had Unknown AutoImmune Diseases? (Please indicate all that apply)

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother □ Spouse/Common law
Family History – Disease

2.1.3. Who in your immediate (birth, biological, related) family has ever had Celiac Disease? (Please indicate all that apply)

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother □ Spouse/Common law

Family History – Disease

2.1.4. Who in your immediate (birth, biological, related) family has ever had Grave Disease? (Please indicate all that apply)

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother□ Spouse/Common law

Family History – Disease

2.1.5. Who in your immediate (birth, biological, related) family has ever had AutoImmune Hepatitis? (Please indicate all that apply)

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother□ Spouse/Common law

Section 2.2: Family History - Cancer

(Follow-up questions are shown for each selection the patient made from previous screen. E.g. if the patient has selected “Unknown cancer”, “Mouth cancer”, and “Leukemia”, the following 3 follow-up questions will be shown to the patient.)

Family History – Cancer

Has anyone in your immediate (birth, biological, related) family ever had the following cancer(s)? (Please select all that apply)

(*Note* Immediate Family includes the following: Father, Mother, Sister, Brother, Son, Daughter,

Father's father, Mother's father, Father's mother, Mother's mother)

□ Colon cancer □ Esophageal cancer □ Gallbladder □ Leukemia □ Liver cancer

□ Bile duct cancer □ Lymphoma □ Mouth cancer □ Small bowel cancer

□ Stomach cancer □ Unknown □ Other: ______□ N/A

Or, □ I am adopted, and I do not know the cancer history of my biological (birth and/or blood related) family.
Family History – Cancer

2.2.1. Who in your immediate (birth, biological, related) family has ever had Unknown cancer?

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother□ Spouse/Common law

Family History – Cancer - 2.2.2. Who in your immediate (birth, biological, related) family has ever had Mouth cancer?

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother □ Spouse/Common law
Family History – Cancer - 2.2.3. Who in your immediate (birth, biological, related) family has ever had Leukemia?

□ Father

□ Mother

□ BrothersIf yes, how many brothers had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SistersIf yes, how many sisters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ SonsIf yes, how many sons had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ DaughtersIf yes, how many daughters had this disease? ______(drop-down box, options: 1,2,3, and >3)

□ Father’s Father□ Father’s Mother

□ Mother’s Father□ Mother’s Mother□ Spouse/Common law

Section 3: Smoking History

Smoking History

3.1a. Do you currently use any non-pharmaceutical tobacco products other than cigarette smoking? (e.g. pipe, smokeless tobacco

products)

□ Yes □ No

3.1b. In a typical week, during how much time, according to your best estimate, are you in the presence of other people smoking

cigarettes or otherwise exposed to cigarette smoke from other people?

□ None □ >0 but <1 hour per week □ 1-3 hours per week □ 4-6 hours per week

□ 1-2 hours per day □ >2 hours per day

Smoking History

Have you ever smoked cigarettes regularly? (No means less than 20 packs of cigarettes or 12oz of tobacco in a lifetime or less than 1 cigarette a day for 1 year)

□ Yes □ No □ Unsure / don’t remember If yes, answer questions a-e:

  1. Do you now smoke cigarettes (as of 1 month ago)? □ Yes □ No
  1. On the average of the entire time you smoked, how many cigarettes did you smoke per day? |__|__|
  1. How old were you when you first started regular cigarette smoking? |__|__| □ Unknown
  1. If you have stopped smoking cigarettes completely, how old were you when you stopped?
    | __|__| □ Not stopped
  2. When you were smoking, did you ever stop smoking for >6 months? □ Yes □ No

If yes, answer question i-ii:

  1. For how many years in total did you stop smoking cigarettes? |__|__|
  2. Did you stop smoking within 6 months of being diagnosed with IBD? □ Yes □ No

Smoking History

3.2.Have you ever smoked a pipe regularly? (Yes means more than 12oz of tobacco in a lifetime.)

□ Yes □ No □ Unknown

If yes, answer question a-e:

  1. Do you now smoke a pipe (as of 1 month ago)? □ Yes □ No
  1. On the average of the entire time you smoked a pipe how much pipe tobacco did you smoke per week? |__|__| (oz./week, a standard pouch of tobacco contains 11/2 oz.)
  1. How old were you when you first started to smoke a pipe? |__|__| □ Unknown
  1. If you have stopped smoking a pipe completely, how old were you when you stopped?
    |__|__| □ Not stopped
  1. When you were smoking a pipe, did you ever stop smoking for >6 months? □ Yes □ No

If yes, answer question i-ii:

  1. For how many years in total did you stop smoking a pipe? |__|__|
  2. Did you stop smoking a pipe within 6 months of being diagnosed with IBD? □ Yes □ No

Smoking History

3.3.Have you ever smoked cigars regularly? (Yes means more than 1 cigar/week for a year)
□ Yes □ No □ Unknown

If yes, answer question a-e:

  1. Do you now smoke cigars (as of 1 month ago)? □ Yes □ No
  1. On the average of the entire time you smoked cigars, how many cigars did you smoke per week? |__|__|
  1. How old were you when you first started to smoke cigars regularly? |__|__| □ Unknown
  1. If you have stopped smoking cigars completely, how old were you when you stopped?
    |__|__| □ Not stopped
  1. When you were smoking cigars, did you ever stop smoking for >6 months? □ Yes □ No

If yes, answer question i-ii:

  1. For how many years in total did you stop smoking cigars? |__|__|
  2. Did you stop smoking cigars within 6 months of being diagnosed with IBD? □ Yes □ No

Smoking History