Form:NOD Baseline Participant Questionnaire v5.0


CDE IDCDE Description
* 421EDRN Participant ID (Go To: 423)
   1832Participant initials: (Go To: 423)
* 423EDRN Protocol ID (Go To: 422)
* 422EDRN Site ID (Go To: 929)
* 929EDRN Staff ID of the person who collected the data: (Go To: 1219)
* 1219Date of contact (MM/DD/YYYY): (Go To: 4223)
* 4223Weight (value): (Go To: 4224)
* 4224Weight (unit): (Go To: 4221)
 
Permissible Values (value):kg (kilograms) (1) (Go To: 4783)
 
 lbs (pounds) (2) (Go To: 4783)
 
 Unknown (99)
* 4783Weight measurement method (Go To: 4221)
 
Permissible Values (value):On a scale, in real time (1)
 
 Medical records (2)
 
 Patient recall (3)
 
 Unknown (99)
* 4221Height (value): (Go To: 4222)
* 4222Height (unit): (Go To: 4933)
 
Permissible Values (value):cm (centimeters) (1) (Go To: 4784)
 
 inches (2) (Go To: 4784)
 
 Unknown (99)
* 4784Height measurement method (Go To: 4933)
 
Permissible Values (value):Stadiometer (1)
 
 Medical records (2)
 
 Patient recall (3)
 
 Unknown (99)
* 4933Weight (value), second instance (Go To: 4934)
* 4934Weight (unit), 2nd instance (Go To: 5023)
 
Permissible Values (value):kg (kilograms) (1)
 
 lbs (pounds) (2)
 
 Unknown (99)
* 5023Weight (value), third instance (Go To: 5022)
* 5022Weight (unit), 3rd instance (Go To: 1322)
 
Permissible Values (value):kg (kilograms) (1)
 
 lbs (pounds) (2)
 
 Unknown (99)
* 1322Hispanic or Latino (Are you Hispanic or Latino?) (Go To: 1315)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1315Race (What is your race? Check all that apply.) (Go To: 1600)
 
Permissible Values (value):White (1)
 
 Black or African-American (2)
 
 American Indian or Alaska Native (3)
 
 Asian (4)
 
 Native Hawaiian or other Pacific Islander (7)
 
 Prefer not to answer (89)
 
 Other, specify: (97) (Go To: 1294)
 
 Unknown (99)
* 1294Race (Other, specify) (Go To: 1600)
* 1600Ashkenazi (Eastern European) Jewish decent: (Is your biological mother or father of Ashkenazi (Eastern European) Jewish decent?) (Go To: 5661)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5661Do you think of yourself as: (Go To: 5662)
 
Permissible Values (value):Male (1)
 
 Female (2)
 
 Prefer not to answer (89)
 
 Other (95)
 
 Unknown (99)
* 5662What was your sex assigned at birth? (Go To: 2979)
 
Permissible Values (value):Male (1)
 
 Female (2)
 
 Prefer not to answer (89)
 
 Other (95)
 
 Unknown (99)
* 2979History of pancreatitis? (Pancreatitis is an inflammation of the pancreas. It can be short-term or long-term) (Go To: 3251)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 3251Gallstones and/or sludge present? (Go To: 1623)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1623Do you have stomach ulcers, or peptic ulcer disease? (Go To: 1307)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1307Ever had cancer [other than basal/squamous cell skin cancer] confirmed by a doctor? (Have you ever had cancer [other than basal/squamous cell skin cancer] confirmed by a doctor?) (Go To: 2275)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 1341)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1341Cancer type/location (Go To: 2275)
 
Permissible Values (value):Bladder (1)
 
 Bone (2)
 
 Brain (3)
 
 Breast (4)
 
 Cervix (5)
 
 Colon (6)
 
 Esophagus (7)
 
 Head & neck (mouth, nose, and throat) (8)
 
 Kidney (9)
 
 Liver (10)
 
 Leukemia (11)
 
 Lung (12)
 
 Lymphoma, including Hodgkins (13)
 
 Ovary (14)
 
 Pancreas (15)
 
 Prostate (16)
 
 Rectum (17)
 
 Skin (melanoma, no basal or squamous) (18)
 
 Stomach (19)
 
 Thyroid (20)
 
 Uterus (21)
 
 Endometrium (22)
 
 Testis (24)
 
 Vagina (26)
 
 Gall bladder (40)
 
 Mesothelioma (42)
 
 Multiple myeloma (44)
 
 Prefer not to answer (89)
 
 Other (95)
 
 Unknown (99)
* 2275Chemotherapy used? (Go To: 2477)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 2477Radiation therapy used? (Go To: 4794)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 4792)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4792Condition(s) that were treated (Check all that apply) (Go To: 4793)
 
Permissible Values (value):Acne (1)
 
 Thyroid (2)
 
 Cancer (3)
 
 Other (95)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4793Body area(s) that were treated (check all that apply) (Go To: 4794)
 
Permissible Values (value):Head (1)
 
 Neck (2)
 
 Chest (3)
 
 Upper back/spine (4)
 
 Abdomen (5)
 
 Groin (6)
 
 Arms (7)
 
 Legs (8)
 
 Lower back/pelvis (9)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4794Allergies (Check all that apply): (Go To: 3165)
 
Permissible Values (value):Seasonal (pollen, mold, etc.) (1)
 
 Environmental (cats, dogs, dust, etc.) (2)
 
 Foods (eggs, milk, peanuts, etc.) (3)
 
 Medications (aspirin, antibiotics, etc.) (4)
 
 No known allergies (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
   3165Has a doctor diagnosed you with yellow jaundice? (Yellow jaundice, in which the skin/eyes turn a yellowish color, is a symptom of liver problems.) (Go To: 4795)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4795Has the participant experienced any of the following symptoms? (Check all that apply) (Go To: 5658)
 
Permissible Values (value):None (0)
 
 Nausea (1)
 
 Vomiting (2)
 
 Indigestion (5)
 
 Heart burn (6)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5658Experience back pain? (Go To: 5659)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 5026)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5026Severity of back pain (Go To: 5659)
 
Permissible Values (value):No pain (0)
 
 Mild pain (does not require narcotics) (1)
 
 Severe pain (requires narcotics) (2)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5659Experience abdominal pain? (Go To: 4796)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 5025)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5025Severity of abdominal pain (Go To: 4796)
 
Permissible Values (value):No pain (0)
 
 Mild pain (does not require narcotics) (1)
 
 Severe pain (requires narcotics) (2)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4796How often do you have a drink containing alcohol? (Go To: 1300)
 
Permissible Values (value):Never (1)
 
 Monthly or less (2) (Go To: 4797)
 
 2-4 times a month (3) (Go To: 4797)
 
 2-3 times a week (4) (Go To: 4797)
 
 4 or more times a week (5) (Go To: 4797)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4797On the days that you do drink, how many drinks do you have on average? (Go To: 1300)
 
Permissible Values (value):1-2 (1)
 
 3-4 (2)
 
 5-6 (3)
 
 7-8 (4)
 
 9-10 (5)
 
 >10 (6)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1300Ever smoke cigarettes regularly, at least one a day for a year or more? (Did you ever smoke cigarettes regularly, at least one a day for a year or more?) (Go To: 4798)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 1299)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1299Currently smoke at least one cigarette a day? (Do you currently smoke cigarettes regularly, at least one a day?) (Go To: 1297)
 
Permissible Values (value):No (0) (Go To: 1298)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1298Age quit smoking cigarettes? (How old were you when you permanently quit smoking cigarettes?) (Go To: 1297)
* 1297Age first began smoking cigarettes regularly, at least one a day? (How old were you when you began smoking cigarettes regularly, at least one a day?) (Go To: 1325)
* 1325Average number of cigarettes smoked per day? (During the time you have smoked, on average, how many cigarettes did you smoke per day?) (Go To: 1301)
* 1301Total number of years smoked? (How many years total have you smoked?) (Go To: 1715)
* 1715Total number of pack years smoked. (Go To: 4798)
* 4798Have you ever lived with someone who smoked regularly? (Go To: 5027)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5027My appetite is (Go To: 5028)
 
Permissible Values (value):Very poor (1)
 
 Poor (2)
 
 Average (3)
 
 Good (4)
 
 Very good (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5028When I eat (Go To: 5029)
 
Permissible Values (value):I feel full after eating only a few mouthfuls (1)
 
 I feel full after eating about a third of a meal (2)
 
 I feel full after eating over half a meal (3)
 
 I feel full after eating most of the meal (4)
 
 I hardly ever feel full (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5029Food tastes (Go To: 5030)
 
Permissible Values (value):Very bad (1)
 
 Bad (2)
 
 Average (3)
 
 Good (4)
 
 Very good (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5030Normally I eat (Go To: 4799)
 
Permissible Values (value):Less than one meal a day (1)
 
 One meal a day (2)
 
 Two meals a day (3)
 
 Three meals a day (4)
 
 More than three meals a day (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4799Rate the level of your lack of appetite (Go To: 4801)
 
Permissible Values (value):I dont have a lack of appetite (1)
 
 Very mild (can usually be ignored) (2) (Go To: 4800)
 
 Mild (can be ignored if I don’t think about it) (3) (Go To: 4800)
 
 Moderate (cannot be ignored, but does not affect your lifestyle) (4) (Go To: 4800)
 
 Severe (affects your life) (5) (Go To: 4800)
 
 Very severe (markedly affects your life) (6) (Go To: 4800)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4800Have you experienced a lack of appetite? (Go To: 4801)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4801How would you compare your appetite (desire to eat) now to what it was 12 months ago? (Go To: 4802)
 
Permissible Values (value):The same (1)
 
 Increased (2)
 
 Slightly reduced (about 75% of normal) (3)
 
 Moderately reduced (about 50% of normal) (4)
 
 Markedly reduced (about 25% of normal or less) (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4802Have you experienced fatigue, breathlessness, and/or chest pain? (Go To: 4806)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 4803)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4803Which of the following describes your ability to carry out your usual activities? (Go To: 4806)
 
Permissible Values (value):I am able to carry out my usual activities. (1)
 
 I can carry out my usual activities with effort. (2)
 
 I am unable to carry out my usual activities. (3)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4806Hours per week spent on low intensity cardiovascular activities (i.e. walking, shopping, leisure and etc.) (Go To: 4807)
* 4807Hours per week spent on high intensity cardiovascular activities (i.e. cycling, running and etc.) (Go To: 1045)
* 1045Performance status (Which of the following options would you say describes your current performance status?) (Go To: 4804)
 
Permissible Values (value):Fully active, able to carry on all pre-disease performance without restriction (0)
 
 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work (1)
 
 Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours (2)
 
 Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours (3)
 
 Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair (4)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4804What kind of job have you held for the longest period of time? (Go To: 4805)
 
Permissible Values (value):Manufacturing (1)
 
 Chemical (2)
 
 Construction (3)
 
 Truck Driver (4)
 
 Agriculture (5)
 
 Sandblasting (6)
 
 Non-Specific Office Job (7)
 
 Mining (8)
 
 Marketing (10)
 
 Health Care Worker (11)
 
 Education (12)
 
 Airline Industry (13)
 
 Welding (9)
 
 Other (95)
 
 Not applicable (98) (Go To: 3269)
 
 Prefer not to answer (89)
 
 Unknown (99) (Go To: 3269)
* 4805How many years total did you work at that job? (Go To: 4808)
 
Permissible Values (value):6 months-1 year (1)
 
 2-4 years (2)
 
 5-10 years (3)
 
 >10 years (4)
 
 Not applicable (98)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4808What kind of tools or equipment did you work with? (Check all that apply) (Go To: 4809)
 
Permissible Values (value):Electronic Devices (1)
 
 Electronic/Power Generation (2)
 
 Material Handling (3)
 
 Plant/Refinery Equipment (4)
 
 Heavy Equipment/Vehicle Operation (5)
 
 Chemicals (6)
 
 Other (95)
 
 Not applicable (98)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4809Where did you spend most of your time while working on that job? (Go To: 3269)
 
Permissible Values (value):Inside Office (1)
 
 Inside Warehouse (2)
 
 Inside Vehicle (3)
 
 Outside in open area (4)
 
 Construction Site (5)
 
 Outside at chemical plant/ refinery (6)
 
 Other (95)
 
 Not applicable (98)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 3269Have you ever had genetic testing? (Go To: 4810)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 4811)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4811Genetic and/or hereditary condition(s) (Check all that apply): (Go To: 4810)
 
Permissible Values (value):Hereditary pancreatitis (1)
 
 BRCA 1/2 related breast and/or ovarian cancer (2)
 
 FAMMM (familial atypical multiple mole/ melanoma) Syndrome (3)
 
 Lynch syndrome (HNPCC) (4)
 
 Peutz-Jeghers syndrome (5)
 
 ATM gene mutation (6)
 
 Cystic Fibrosis (7)
 
 Prefer not to answer (89)
 
 Other, specify: (97) (Go To: 4829)
 
 Unknown (99)
* 4829Genetic and/or hereditary condition(s). Other, specify (Go To: 4810)
* 4810Are you adopted? (Go To: 3144)
 
Permissible Values (value):No (0)
 
 Yes, with access to family health history (1)
 
 Yes, with no access to family health history (3) (Go To: 1097)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 3144Number of loops: (Go To: 3200)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
 
 11 (11)
 
 12 (12)
 
 13 (13)
 
 14 (14)
 
 15 (15)
 
 16 (16)
 
 17 (17)
 
 18 (18)
 
 19 (19)
 
 20 (20)
 
 21 (21)
 
 22 (22)
 
 23 (23)
 
 24 (24)
 
 25 (25)
 
 26 (26)
 
 27 (27)
 
 28 (28)
 
 29 (29)
 
 30 (30)
 
 31 (31)
 
 32 (32)
 
 33 (33)
 
 34 (34)
 
 35 (35)
 
 36 (36)
 
 37 (37)
 
 38 (38)
 
 40 (40)
* 3200Line number or identifier (system-generated): (Go To: 3199)
* 3199Relative type (for medical condition): (Go To: 4815)
 
Permissible Values (value):Brother (1)
 
 Sister (2)
 
 Son (3)
 
 Daughter (4)
 
 Father (5)
 
 Mother (6)
* 4815Relative vital status (Go To: 4816)
 
Permissible Values (value):Alive (0)
 
 Deceased (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4816Relative cigarette smoking (Go To: 4817)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4817Relative diabetes (Go To: 4818)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4818Relative pancreatitis (Go To: 4819)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4819Relative pancreatic cancer (Go To: 1349)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1349Have any of the participant´s living and deceased first degree blood relatives been diagnosed with cancer [other than basal/squamous cell skin cancer]? (Have any of your living and deceased first degree blood relatives (biological parents, siblings, children) been diagnosed with cancer [other than basal/squamous cell skin cancer]? [Not including half-siblings, step-siblings, step-parents, or step-children]. (Go To: 4813)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4813Family member genetic and/or hereditary condition(s) (check all that apply): (Go To: 3158)
 
Permissible Values (value):No (0)
 
 Hereditary pancreatitis (1)
 
 BRCA 1/2 related breast and/or ovarian cancer (2)
 
 FAMMM (familial atypical multiple mole/ melanoma) Syndrome (3)
 
 Lynch syndrome (HNPCC) (4)
 
 Peutz-Jeghers syndrome (5)
 
 ATM gene mutation (6)
 
 Cystic Fibrosis (7)
 
 Other, specify: (97) (Go To: 4814)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4814Family member genetic and/or hereditary condition(s) Other, specify (Go To: 3158)
   3158Loop-specific comments: (Go To: 1097)
   1097Comments (do not include any participant identifiers) (Go To: End of Form)