Form:Pancreatic Cystic Fluid Reference Set: Participant v2.0


CDE IDCDE Description
* 421EDRN Participant ID (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: 2788)
* 2788Age at selection: (Go To: 2573)
   2573Marital status: (Go To: 1296)
 
Permissible Values (value):Never Married (1)
 
 Married (2)
 
 Domestic Partnership (3)
 
 Separated (4)
 
 Divorced (5)
 
 Widowed (6)
 
 Refused (88)
 
 Unknown (99)
   1296Highest level of education completed: (Go To: 1322)
 
Permissible Values (value):8th grade or less (0)
 
 Less than high school graduate (1)
 
 High school graduate or completed GED (2)
 
 Some college or technical school (3)
 
 College graduate (4)
 
 Post graduate degree (5)
 
 Refused (88)
 
 Unknown (99)
* 1322Hispanic or Latino (Are you Hispanic or Latino?) (Go To: 1315)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Refused (88)
 
 Unknown (99)
* 1315Race (What is your race? Check all that apply.) (Go To: 1292)
 
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)
 
 Refused (88)
 
 Other, specify: (97) (Go To: 1294)
 
 Unknown (99)
* 1294Race (Other, specify) (Go To: 1292)
* 1292Height [in inches] (What is your total current height in inches?) (Go To: 1295)
* 1295Weight [in pounds] (What is your current weight [in pounds]? (Go To: 3203)
   3203What was your usual weight (in pounds)? (Go To: 3204)
   3204What was your weight (in pounds) when you were 18 years old? (Go To: 1300)
* 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: 1328)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 1299)
 
 Refused (88)
 
 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)
 
 Refused (88)
 
 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: 1328)
* 1328Has participant ever had at least one drink of alcohol [beer, liquor, wine, or wine coolers] per month during a twelve-month period? (Have you ever had at least one drink of alcohol [beer, liquor, wine, or wine coolers] per month during a twelve-month period?) (Go To: 3194)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 1330)
 
 Refused (88)
 
 Unknown (99)
* 1330On average, how many glasses/cans of beer do you drink? Count a twelve-ounce can as one beer. (Go To: 1329)
 
Permissible Values (value):None (4)
 
 <1 per week (5)
 
 1-6 per week (6)
 
 1-2 per day (7)
 
 3-5 per day (8)
 
 6+ per day (9)
 
 Refused (88)
 
 Unknown (99)
* 1329On average, how many glasses of wine do you drink? Count a four-ounce glass of wine as one drink. (Go To: 1331)
 
Permissible Values (value):None (4)
 
 <1 per week (5)
 
 1-6 per week (6)
 
 1-2 per day (7)
 
 3-5 per day (8)
 
 6+ per day (9)
 
 Refused (88)
 
 Unknown (99)
* 1331On average, how many shots of hard liquor or mixed drinks do you drink? Count one shot (1 1/2 ounces) or one mixed drink as one drink. (Go To: 3194)
 
Permissible Values (value):None (4)
 
 <1 per week (5)
 
 1-6 per week (6)
 
 1-2 per day (7)
 
 3-5 per day (8)
 
 6+ per day (9)
 
 Refused (88)
 
 Unknown (99)
* 3194Date of diagnosis for pancreatic cyst (MM/DD/YYYY): (Go To: 2887)
* 2887Diagnosis method: (Go To: 2714)
 
Permissible Values (value):EUS (Endoscopic Ultrasound) (5)
 
 Radiology (6)
 
 Abdominal CT scan (10)
 
 Abdominal ultrasound (11)
 
 Abdominal MRI or MRCP (12)
 
 Refused (88)
 
 Other, specify: (97) (Go To: 2496)
 
 Unknown (99)
* 2496Cancer diagnosis method (Other, specify): (Go To: 2714)
* 2714Procedure performed at the study site? (Go To: 2979)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Refused (88)
 
 Unknown (99)
* 2979History of pancreatitis? (Pancreatitis is an inflammation of the pancreas. It can be short-term or long-term) (Go To: 3269)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3205)
 
 Refused (88)
 
 Unknown (99)
* 3205Pancreatitis type: (Check all that apply) (Go To: 3206)
 
Permissible Values (value):Acute Pancreatitis (1) (Go To: 3207)
 
 Recurrent Acute pancreatitis (RAP) (2) (Go To: 3207)
 
 Chronic pancreatitis (3)
 
 Refused (88)
 
 Unknown (99)
* 3207How many attacks do you have per year? (Go To: 3208)
* 3208How many days does each attack last? (Go To: 3209)
* 3209How many times have you been hospitalized due to attacks? (Go To: 3206)
* 3206Age diagnosed with pancreatitis: (Go To: 3269)
* 3269Have you ever had genetic testing? (Go To: 3053)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3270)
 
 Refused (88)
 
 Unknown (99)
* 3270Type of genetic testing (check all that apply): (Go To: 3053)
 
Permissible Values (value):MLH1 (for Lynch syndrome or herediatry non-polyposis colorectal cancer) (1)
 
 MSH2 (for Lynch syndrome or herediatry non-polyposis colorectal cancer) (2)
 
 MSH6 (for Lynch syndrome or herediatry non-polyposis colorectal cancer) (3)
 
 PMS1 (for Lynch syndrome or herediatry non-polyposis colorectal cancer) (4)
 
 PMS2 (for Lynch syndrome or herediatry non-polyposis colorectal cancer) (5)
 
 APC (for familial adenomatous polyposis) (6)
 
 CDKN2A (p16) (for FAMMM or familial atypical multiple-mole melanoma) (7)
 
 SMAD4 (MADH4, DPC4) (for familial juvenile polyposis syndrome) (8)
 
 STK11 (for Peutz-Jeghers polyposis) (9)
 
 BRCA1 (for hereditary breast and ovarian cancer) (10)
 
 BRCA2 (for hereditary breast and ovarian cancer) (11)
 
 ATM (for Ataxia telangiectasia) (12)
 
 P53 (for Li-Fraumeni syndrome) (13)
 
 Cationic trypsinogen gene (PRSS1) (for hereditary pancreatitis syndrome) (14)
 
 protease serine-1 (PSTI (SPINK1) (for hereditary pancreatitis syndrome) (15)
 
 cystic fibrosis gene (CFTR) (for hereditary pancreatitis syndrome) (16)
 
 VHL gene (for Von-Hippel Landau syndrome) (17)
 
 MEN1 type 1 syndrome (for multiple endocrine neoplasia ) (18)
 
 TSC2 (for tuberous sclerosis syndrome ) (19)
 
 Refused (88)
 
 Other, specify: (97) (Go To: 3271)
 
 Unknown (99)
* 3271Type of genetic testing (Other, specify); (Go To: 3053)
* 3053Have you ever been diagnosed by a doctor with any of the following conditions? (Check all that apply) (Go To: 3217)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3222)
 
 Refused (88)
 
 Unknown (99)
* 3222Number of subform loops to record 5: (Go To: 3219)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
* 3219Line number or identifier 5 (system-generated): (Go To: 3212)
* 3212Medical condition (select one): (Go To: 3215)
 
Permissible Values (value):Anemia (1)
 
 Angina (chest pains) (2)
 
 Arthritis or osteoporosis (thinning of bones) (3)
 
 Asbestosis (4)
 
 Asthma (5)
 
 Chronic bronchitis or emphysema (7)
 
 Colon Polyps (8)
 
 Dermatitis or eczema (10)
 
 Epilepsy (spells, fits, or seizures) (12)
 
 Gallstones or gall bladder disease (15)
 
 Glaucoma (16)
 
 Gout (18)
 
 Heart attack (19)
 
 Heart failure (20)
 
 Heart murmur (21)
 
 Hepatitis (22)
 
 High blood pressure (hypertension) (23)
 
 High cholesterol (24)
 
 High triglycerides (type of fat in blood) (25)
 
 Hives, hay fever, other allergies (26)
 
 Inflammatory Bowel Disease (27)
 
 Intestinal problems, for example colitis or diverticulosis (28)
 
 Irritable bowel Syndrome (a.k.a. IBS or spastic colon) (29)
 
 Kidney problems (nephritis, kidney infection, kidney stones, kidney failure) (30)
 
 Liver disease, yellow jaundice, hepatitis, cirrhosis (31)
 
 Men only: Problems of the prostate (infection, enlargement) (32)
 
 Migraine headaches (33)
 
 Nervous or emotional disorder (34)
 
 Peptic Ulcer (36)
 
 Pneumonia (37)
 
 Psoriasis (38)
 
 Serious chest injury (39)
 
 Stroke (40)
 
 Thyroid trouble (over active, under active, goiter) (41)
 
 Tuberculosis (TB) (42)
 
 Ulcers of the stomach or duodenum (43)
 
 Women only: Diabetes (gestational) (44)
 
 Women only: Problems with breast (45)
 
 Women only: Problems with female organs (46)
 
 Refused (88)
 
 Other, specify: (97) (Go To: 3216)
 
 Unknown (99)
* 3216Medical condition (Other, specify): (Go To: 3215)
* 3215Age at diagnosis for medical condition: (Go To: 1873)
* 1873Medication Name: (Go To: 3272)
   3272Loop-specific comments 5: (Go To: 3217)
* 3217Have you ever had any of the following procedures or tests? (Check all that apply) (Go To: 3228)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3227)
 
 Refused (88)
 
 Unknown (99)
* 3227Number of subform loops to record 6: (Go To: 3220)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
* 3220Line number or identifier 6 (system-generated): (Go To: 3218)
* 3218Procedure: (select one) (Go To: 3223)
 
Permissible Values (value):CA 19-9 (Tumor marker found with a blood sample) (1)
 
 CAT Scan (CT scan-Computed tomography scan) (2)
 
 CEA (Tumor marker found with a blood sample) (3)
 
 ERCP (Endoscopic retrograde cholangiopancreatography) Endoscopic procedure to determine cause of jaundice (4)
 
 EUS (Endoscopic Ultrasound) (5)
 
 MRI (6)
 
 PET scan (7)
 
 Ultrasound (8)
 
 Refused (88)
 
 Other, specify: (97) (Go To: 3121)
 
 Unknown (99)
* 3121Procedures received (Other, specify): (Go To: 3223)
* 3223Date of procedure (MM/DD/YYYY): (Go To: 3273)
   3273Loop-specific comments 6: (Go To: 3228)
* 3228Have you ever taken any of the following medications? (Check all that apply) (Go To: 3156)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3221)
 
 Refused (88)
 
 Unknown (99)
* 3221Number of subform loops to record 4: (Go To: 3213)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
* 3213Line number or identifier 4 (system-generated): (Go To: 3229)
* 3229Medication taken: (Go To: 2466)
 
Permissible Values (value):Aspirin (Anacin, Ascriptin, Bayer, Bufferin, Ecotrin, Excedrin) (1)
 
 Hormone replacement therapy (3)
 
 Insulin (5)
 
 NSAIDS (8)
 
 Oral diabetic medication (10)
 
 Pancreatic enzymes (15)
 
 Steroids (20)
* 2466How long was this medication taken? (Go To: 2481)
   2481How long was this medication or treatment taken? (unit) (Go To: 2981)
 
Permissible Values (value):Days (2)
 
 Weeks (3)
 
 Months (4)
 
 Years (5)
* 2981Medication use type: (Go To: 3153)
 
Permissible Values (value):Regular use (1)
 
 Occasional use (2)
 
 Refused (88)
 
 Unknown (99)
   3153Medication use comments: (Go To: 3156)
* 3156Ever diagnosed with diabetes by a doctor? (Go To: 1631)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3210)
 
 Refused (88)
 
 Unknown (99)
* 3210Type of diabetes: (Go To: 3211)
 
Permissible Values (value):Type 1 diabetes (1)
 
 Type 2 diabetes (2)
 
 Refused (88)
 
 Unknown (99)
* 3211Age when diagnosed with diabetes: (Go To: 2467)
* 2467Has participant taken any of the following diabetes medications? (Go To: 1631)
 
Permissible Values (value):None (44)
 
 Diet Control (11)
 
 Insulin (5)
 
 Oral diabetic medication (10)
* 1631Have you ever had exposure to therapeutic radiation, including for cancer treatment? (Go To: 3225)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3264)
 
 Refused (88)
 
 Unknown (99)
* 3264Age at time of radiation: (Go To: 3266)
* 3266Radiation therapy site: (Go To: 3265)
* 3265Reason for radiation therapy: (Go To: 3225)
* 3225Have you ever had any of the following surgeries? (Go To: 1307)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3230)
 
 Refused (88)
 
 Unknown (99)
* 3230Number of subform loops to record 7: (Go To: 3231)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
* 3231Line number or identifier 7 (system-generated): (Go To: 2605)
* 2605Surgery type: (Go To: 774)
 
Permissible Values (value):Biliary Bypass (10)
 
 Gallstones and/or gallbladder removed (30)
 
 Gastrectomy (40)
 
 Gastric bypass (50)
 
 Pancreatic (60) (Go To: End of Form)
 
 Resection of abdominal malignancy (70)
 
 Refused (88)
 
 Other, specify: (97) (Go To: 3226)
 
 Unknown (99)
* 3226Surgery type (Other, specify): (Go To: 774)
* 774Date of surgery (MM/DD/YYYY): (Go To: 3274)
   3274Loop-specific comments 7: (Go To: 1307)
* 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: 1380)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3142)
 
 Refused (88) (Go To: End of Form)
 
 Unknown (99) (Go To: End of Form)
* 3142Number of cancers to record: (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)
* 3200Line number or identifier (system-generated): (Go To: 1341)
* 1341Cancer type/location (Go To: 1333)
 
Permissible Values (value):Bladder (1)
 
 Bone (2)
 
 Brain (3)
 
 Breast (4)
 
 Cervix (5)
 
 Colon (6)
 
 Endometrium (22)
 
 Esophagus (7)
 
 Gall bladder (40)
 
 Head & neck (mouth, nose, and throat) (8)
 
 Kidney (9)
 
 Leukemia (11)
 
 Liver (10)
 
 Lung (12)
 
 Lymphoma, including Hodgkins (13)
 
 Mesothelioma (42)
 
 Multiple myeloma (44)
 
 Ovary (14)
 
 Pancreas (15) (Go To: End of Form)
 
 Prostate (16)
 
 Rectum (17)
 
 Skin (melanoma, no basal or squamous) (18)
 
 Stomach (19)
 
 Testis (24)
 
 Thyroid (20)
 
 Uterus (21)
 
 Vagina (26)
 
 Other (95)
 
 Refused (88) (Go To: End of Form)
 
 Unknown (99) (Go To: End of Form)
* 1333Date of diagnosis (MM/YYYY): (Go To: 2149)
* 2149Has the participant been cancer-free for 5 years or more? (Other than basal/squamous cell skin cancer.) (Go To: 3158)
 
Permissible Values (value):No (0) (Go To: End of Form)
 
 Yes (1)
 
 Refused (88) (Go To: End of Form)
 
 Unknown (99) (Go To: End of Form)
   3158Loop-specific comments: (Go To: 1380)
* 1380Number of living and deceased first-degree blood brothers: (How many living and deceased blood-related brothers do you have? [Not including adopted, foster, half-brothers or step-brothers] (Go To: 1381)
* 1381Number of living and deceased first-degree blood sisters: (How many living and deceased blood-related sisters do you have? [Not including adopted, foster, half-sisters or step-sisters] (Go To: 1378)
* 1378Number of living and deceased blood-related sons: (How many living and deceased blood-related sons do you have? [Not including adopted, foster, or step-sons] (Go To: 1379)
* 1379Number of living and deceased blood-related daughters: (How many living and deceased blood-related daughters do you have? [Not including adopted, foster, or step-daughters] (Go To: 1349)
* 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: 3197)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3143)
 
 Refused (88)
 
 Unknown (99)
* 3143Number of relative´s cancers to record: (Go To: 3201)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
* 3201Line number or identifier 2 (system-generated): (Go To: 1351)
* 1351Relative type (mother, brother, etc) (Go To: 1311)
 
Permissible Values (value):Brother (1)
 
 Sister (2)
 
 Son (3)
 
 Daughter (4)
 
 Father (5)
 
 Mother (6)
 
 Refused (88)
 
 Unknown (99)
* 1311First primary cancer: (Go To: 1430)
 
Permissible Values (value):Bladder (1)
 
 Bone (2)
 
 Brain (3)
 
 Breast (4)
 
 Cervix (5)
 
 Colon (6)
 
 Endometrium (22)
 
 Esophagus (7)
 
 Gall bladder (40)
 
 Head & neck (mouth, nose, and throat) (8)
 
 Kidney (9)
 
 Leukemia (11)
 
 Liver (10)
 
 Lung (12)
 
 Lymphoma, including Hodgkins (13)
 
 Mesothelioma (42)
 
 Multiple myeloma (44)
 
 Ovary (14)
 
 Pancreas (15)
 
 Prostate (16)
 
 Rectum (17)
 
 Skin (melanoma, no basal or squamous) (18)
 
 Stomach (19)
 
 Testis (24)
 
 Thyroid (20)
 
 Uterus (21)
 
 Vagina (26)
 
 Other (95)
 
 Refused (88)
 
 Unknown (99)
* 1430Relative´s age when diagnosed (Go To: 1317)
* 1317Subsequent primary cancer(s): (Go To: 3197)
 
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)
 
 Refused (88)
 
 Other (95)
 
 Unknown (99)
 
 None (444)
* 3197Have any of your living and deceased first degree blood relatives (biological parents, siblings, children) been diagnosed with Diabetes, Pancreatitis, Colon Polyps or Pancreatic Cysts? [Not including half-siblings, step-siblings, step-parents, or step-children]. (Go To: 1320)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 3214)
 
 Refused (88)
 
 Unknown (99)
* 3214Number of subform loops to record 2: (Go To: 3202)
 
Permissible Values (value):1 (1)
 
 2 (2)
 
 3 (3)
 
 4 (4)
 
 5 (5)
 
 6 (6)
 
 7 (7)
 
 8 (8)
 
 9 (9)
 
 10 (10)
* 3202Line number or identifier 3 (system-generated): (Go To: 3199)
* 3199Relative type (for medical condition): (Go To: 3196)
 
Permissible Values (value):Brother (1)
 
 Sister (2)
 
 Son (3)
 
 Daughter (4)
 
 Father (5)
 
 Mother (6)
 
 Refused (88)
 
 Unknown (99)
* 3196Relative's medical condition (select one) (Go To: 3198)
 
Permissible Values (value):Colon Polyps (8)
 
 Diabetes (10)
 
 Pancreatic cyst (12)
 
 Pancreatitis (14)
 
 Refused (88)
 
 Unknown (99)
* 3198Age at which relative´s condition was diagnosed: (Go To: 1320)
* 1320Gender (What is your gender?) (Go To: 1097)
 
Permissible Values (value):Male (1)
 
 Female (2) (Go To: 1347)
 
 Refused (88)
 
 Unknown (99)
* 1347Age of first menstrual period? (How old were you when you first started having menstrual periods?) (Go To: 1316)
* 1316Have menstrual periods stopped due to natural menopause, hysterectomy, the removal of both ovaries, or radiation or chemotherapy treatment? (Have your menstrual periods stopped due to natural menopause, hysterectomy, the removal of both ovaries, or radiation or chemotherapy treatment?) (Go To: 1097)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 1348)
 
 Refused (88)
 
 Unknown (99)
* 1348Age when menstrual periods stopped (How old were you when your menstrual periods stopped?) (Go To: 1097)
   1097Comments (do not include any participant identifiers) (Go To: End of Form)