CDE ID | CDE Description | * 421 | EDRN Participant ID (Go To: 423) |
1832 | Participant initials: (Go To: 423) |
* 423 | EDRN Protocol ID (Go To: 422) |
* 422 | EDRN Site ID (Go To: 929) |
* 929 | EDRN Staff ID of the person who collected the data: (Go To: 1219) |
* 1219 | Date of contact (MM/DD/YYYY): (Go To: 4223) |
* 4223 | Weight (value): (Go To: 4224) |
* 4224 | Weight (unit): (Go To: 4221) |
| Permissible Values (value): | kg (kilograms) (1) (Go To: 4783) |
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| | lbs (pounds) (2) (Go To: 4783) |
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* 4783 | Weight measurement method (Go To: 4221) |
| Permissible Values (value): | On a scale, in real time (1) |
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* 4221 | Height (value): (Go To: 4222) |
* 4222 | Height (unit): (Go To: 4933) |
| Permissible Values (value): | cm (centimeters) (1) (Go To: 4784) |
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* 4784 | Height measurement method (Go To: 4933) |
| Permissible Values (value): | Stadiometer (1) |
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* 4933 | Weight (value), second instance (Go To: 4934) |
* 4934 | Weight (unit), 2nd instance (Go To: 5023) |
| Permissible Values (value): | kg (kilograms) (1) |
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* 5023 | Weight (value), third instance (Go To: 5022) |
* 5022 | Weight (unit), 3rd instance (Go To: 1322) |
| Permissible Values (value): | kg (kilograms) (1) |
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* 1322 | Hispanic or Latino (Are you Hispanic or Latino?) (Go To: 1315) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 1315 | Race (What is your race? Check all that apply.) (Go To: 1600) |
| Permissible Values (value): | White (1) |
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| | Black or African-American (2) |
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| | American Indian or Alaska Native (3) |
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| | Native Hawaiian or other Pacific Islander (7) |
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| | Prefer not to answer (89) |
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| | Other, specify: (97) (Go To: 1294) |
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* 1294 | Race (Other, specify) (Go To: 1600) |
* 1600 | Ashkenazi (Eastern European) Jewish decent: (Is your biological mother or father of Ashkenazi (Eastern European) Jewish decent?) (Go To: 5661) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 5661 | Do you think of yourself as: (Go To: 5662) |
| Permissible Values (value): | Male (1) |
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| | Prefer not to answer (89) |
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* 5662 | What was your sex assigned at birth? (Go To: 2979) |
| Permissible Values (value): | Male (1) |
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| | Prefer not to answer (89) |
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* 2979 | History 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) |
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| | Prefer not to answer (89) |
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* 3251 | Gallstones and/or sludge present? (Go To: 1623) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 1623 | Do you have stomach ulcers, or peptic ulcer disease? (Go To: 1307) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 1307 | Ever 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) |
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| | Prefer not to answer (89) |
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* 1341 | Cancer type/location (Go To: 2275) |
| Permissible Values (value): | Bladder (1) |
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| | Head & neck (mouth, nose, and throat) (8) |
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| | Lymphoma, including Hodgkins (13) |
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| | Skin (melanoma, no basal or squamous) (18) |
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| | Prefer not to answer (89) |
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* 2275 | Chemotherapy used? (Go To: 2477) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 2477 | Radiation therapy used? (Go To: 4794) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4792 | Condition(s) that were treated (Check all that apply) (Go To: 4793) |
| Permissible Values (value): | Acne (1) |
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| | Prefer not to answer (89) |
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* 4793 | Body area(s) that were treated (check all that apply) (Go To: 4794) |
| Permissible Values (value): | Head (1) |
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| | Prefer not to answer (89) |
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* 4794 | Allergies (Check all that apply): (Go To: 3165) |
| Permissible Values (value): | Seasonal (pollen, mold, etc.) (1) |
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| | Environmental (cats, dogs, dust, etc.) (2) |
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| | Foods (eggs, milk, peanuts, etc.) (3) |
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| | Medications (aspirin, antibiotics, etc.) (4) |
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| | Prefer not to answer (89) |
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3165 | Has 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) |
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| | Prefer not to answer (89) |
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* 4795 | Has the participant experienced any of the following symptoms? (Check all that apply) (Go To: 5658) |
| Permissible Values (value): | None (0) |
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| | Prefer not to answer (89) |
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* 5658 | Experience back pain? (Go To: 5659) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 5026 | Severity of back pain (Go To: 5659) |
| Permissible Values (value): | No pain (0) |
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| | Mild pain (does not require narcotics) (1) |
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| | Severe pain (requires narcotics) (2) |
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| | Prefer not to answer (89) |
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* 5659 | Experience abdominal pain? (Go To: 4796) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 5025 | Severity of abdominal pain (Go To: 4796) |
| Permissible Values (value): | No pain (0) |
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| | Mild pain (does not require narcotics) (1) |
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| | Severe pain (requires narcotics) (2) |
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| | Prefer not to answer (89) |
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* 4796 | How often do you have a drink containing alcohol? (Go To: 1300) |
| Permissible Values (value): | Never (1) |
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| | Monthly or less (2) (Go To: 4797) |
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| | 2-4 times a month (3) (Go To: 4797) |
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| | 2-3 times a week (4) (Go To: 4797) |
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| | 4 or more times a week (5) (Go To: 4797) |
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| | Prefer not to answer (89) |
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* 4797 | On the days that you do drink, how many drinks do you have on average? (Go To: 1300) |
| Permissible Values (value): | 1-2 (1) |
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| | Prefer not to answer (89) |
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* 1300 | Ever 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) |
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| | Prefer not to answer (89) |
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* 1299 | Currently 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) |
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| | Prefer not to answer (89) |
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* 1298 | Age quit smoking cigarettes? (How old were you when you permanently quit smoking cigarettes?) (Go To: 1297) |
* 1297 | Age 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) |
* 1325 | Average 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) |
* 1301 | Total number of years smoked? (How many years total have you smoked?) (Go To: 1715) |
* 1715 | Total number of pack years smoked. (Go To: 4798) |
* 4798 | Have you ever lived with someone who smoked regularly? (Go To: 5027) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 5027 | My appetite is (Go To: 5028) |
| Permissible Values (value): | Very poor (1) |
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| | Prefer not to answer (89) |
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* 5028 | When I eat (Go To: 5029) |
| Permissible Values (value): | I feel full after eating only a few mouthfuls (1) |
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| | I feel full after eating about a third of a meal (2) |
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| | I feel full after eating over half a meal (3) |
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| | I feel full after eating most of the meal (4) |
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| | I hardly ever feel full (5) |
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| | Prefer not to answer (89) |
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* 5029 | Food tastes (Go To: 5030) |
| Permissible Values (value): | Very bad (1) |
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| | Prefer not to answer (89) |
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* 5030 | Normally I eat (Go To: 4799) |
| Permissible Values (value): | Less than one meal a day (1) |
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| | More than three meals a day (5) |
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| | Prefer not to answer (89) |
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* 4799 | Rate the level of your lack of appetite (Go To: 4801) |
| Permissible Values (value): | I dont have a lack of appetite (1) |
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| | Very mild (can usually be ignored) (2) (Go To: 4800) |
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| | Mild (can be ignored if I don’t think about it) (3) (Go To: 4800) |
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| | Moderate (cannot be ignored, but does not affect your lifestyle) (4) (Go To: 4800) |
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| | Severe (affects your life) (5) (Go To: 4800) |
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| | Very severe (markedly affects your life) (6) (Go To: 4800) |
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| | Prefer not to answer (89) |
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* 4800 | Have you experienced a lack of appetite? (Go To: 4801) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4801 | How 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) |
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| | Slightly reduced (about 75% of normal) (3) |
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| | Moderately reduced (about 50% of normal) (4) |
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| | Markedly reduced (about 25% of normal or less) (5) |
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| | Prefer not to answer (89) |
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* 4802 | Have you experienced fatigue, breathlessness, and/or chest pain? (Go To: 4806) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4803 | Which 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) |
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| | I can carry out my usual activities with effort. (2) |
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| | I am unable to carry out my usual activities. (3) |
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| | Prefer not to answer (89) |
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* 4806 | Hours per week spent on low intensity cardiovascular activities (i.e. walking, shopping, leisure and etc.) (Go To: 4807) |
* 4807 | Hours per week spent on high intensity cardiovascular activities (i.e. cycling, running and etc.) (Go To: 1045) |
* 1045 | Performance 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) |
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| | 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) |
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| | Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours (2) |
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| | Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours (3) |
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| | Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair (4) |
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| | Prefer not to answer (89) |
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* 4804 | What kind of job have you held for the longest period of time? (Go To: 4805) |
| Permissible Values (value): | Manufacturing (1) |
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| | Non-Specific Office Job (7) |
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| | Not applicable (98) (Go To: 3269) |
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| | Prefer not to answer (89) |
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| | Unknown (99) (Go To: 3269) |
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* 4805 | How many years total did you work at that job? (Go To: 4808) |
| Permissible Values (value): | 6 months-1 year (1) |
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| | Prefer not to answer (89) |
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* 4808 | What kind of tools or equipment did you work with? (Check all that apply) (Go To: 4809) |
| Permissible Values (value): | Electronic Devices (1) |
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| | Electronic/Power Generation (2) |
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| | Plant/Refinery Equipment (4) |
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| | Heavy Equipment/Vehicle Operation (5) |
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| | Prefer not to answer (89) |
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* 4809 | Where did you spend most of your time while working on that job? (Go To: 3269) |
| Permissible Values (value): | Inside Office (1) |
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| | Outside at chemical plant/ refinery (6) |
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| | Prefer not to answer (89) |
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* 3269 | Have you ever had genetic testing? (Go To: 4810) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4811 | Genetic and/or hereditary condition(s) (Check all that apply): (Go To: 4810) |
| Permissible Values (value): | Hereditary pancreatitis (1) |
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| | BRCA 1/2 related breast and/or ovarian cancer (2) |
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| | FAMMM (familial atypical multiple mole/ melanoma) Syndrome (3) |
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| | Lynch syndrome (HNPCC) (4) |
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| | Peutz-Jeghers syndrome (5) |
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| | Prefer not to answer (89) |
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| | Other, specify: (97) (Go To: 4829) |
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* 4829 | Genetic and/or hereditary condition(s). Other, specify (Go To: 4810) |
* 4810 | Are you adopted? (Go To: 3144) |
| Permissible Values (value): | No (0) |
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| | Yes, with access to family health history (1) |
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| | Yes, with no access to family health history (3) (Go To: 1097) |
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| | Prefer not to answer (89) |
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* 3144 | Number of loops: (Go To: 3200) |
| Permissible Values (value): | 1 (1) |
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* 3200 | Line number or identifier (system-generated): (Go To: 3199) |
* 3199 | Relative type (for medical condition): (Go To: 4815) |
| Permissible Values (value): | Brother (1) |
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* 4815 | Relative vital status (Go To: 4816) |
| Permissible Values (value): | Alive (0) |
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| | Prefer not to answer (89) |
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* 4816 | Relative cigarette smoking (Go To: 4817) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4817 | Relative diabetes (Go To: 4818) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4818 | Relative pancreatitis (Go To: 4819) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 4819 | Relative pancreatic cancer (Go To: 1349) |
| Permissible Values (value): | No (0) |
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| | Prefer not to answer (89) |
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* 1349 | Have 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) |
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| | Prefer not to answer (89) |
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* 4813 | Family member genetic and/or hereditary condition(s) (check all that apply): (Go To: 3158) |
| Permissible Values (value): | No (0) |
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| | Hereditary pancreatitis (1) |
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| | BRCA 1/2 related breast and/or ovarian cancer (2) |
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| | FAMMM (familial atypical multiple mole/ melanoma) Syndrome (3) |
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| | Lynch syndrome (HNPCC) (4) |
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| | Peutz-Jeghers syndrome (5) |
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| | Other, specify: (97) (Go To: 4814) |
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| | Prefer not to answer (89) |
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* 4814 | Family member genetic and/or hereditary condition(s) Other, specify (Go To: 3158) |
3158 | Loop-specific comments: (Go To: 1097) |
1097 | Comments (do not include any participant identifiers) (Go To: End of Form) |