Gentac.rti.org

This study has a clinical exemption under 24USC 285b and 285d We are interested in learning more about people who are thought to have a genetic condition that may cause a problem with their thoracic aorta. As you complete this form, answer the questions as best as you can. If you don’t know the answer or do not want to answer a question, you may leave it blank. If you are completing this form for a child or other dependent that is enrolled in this study, any references to “you” or “your” refer to that person. Today’s Date: |___|___|-|___|___|-|___|___|___|___| Month SECTION A: DEMOGRAPHIC DATA
Not Applicable (subject is a child) Married or living as married (including living 7. Are you covered by health insurance or some other No Î GO TO Q8
Yes
3. Which of the following groups describes your race? (You may choose more than one.)
7a. What kind of health insurance or health care coverage do you have? (Choose only one.)
Private health insurance plan from employer Native Hawaiian or Other Pacific Islander Other, specify:_________________________ 4. Are you of Hispanic or Latino origin? 8. What is your approximate yearly household income? No Î GO TO Q5
5. What is the highest level of schooling you have completed? (Choose only one.)
9. What is your primary current employment status? (Choose only one.)
Employed full-time at a job or business Employed part-time at a job or business 1-3 years vocational education beyond high One or more years of graduate school or Something else (Please describe below)
Unemployed
Something else (Please describe below)
IF YOU ARE UNDER 18 YEARS OF AGE, CHECK THIS BOX AND GO TO SECTION E.
SECTION B: ALCOHOL USE
SECTION C: SMOKING HISTORY
The next two questions ask about your general habits 1. During your lifetime, have you smoked at least 100 concerning alcoholic beverages. For these questions, a
drink is defined as one beer, a glass of wine, or a
shot of hard liquor.
No Î GO TO SECTION D
Yes
1. During the past 12 months, how often did you usually drink any kind of alcoholic beverage? Never Î GO TO SECTION C
3. On average, how much do you or did you smoke each day? (1 pack = 20 cigarettes)
2. During the past 12 months, about how many drinks 4. What is the total number of years you smoked cigarettes? (Do not count years you did not smoke.) _______ Total number of years you smoked cigarettes 5. Other than cigarettes, which of the following tobacco products have you used on a regular basis for six
months or longer? (Choose all the tobacco
products that you used.)
Pipe Cigars Cigarillos Chewing tobacco Snuff Never used any of these tobacco products for SECTION D: RECREATIONAL DRUG USE
The next questions are about certain drugs you might have used on a recreational basis. Place an X in Column A if you’ve used the drug in the past 12 months. Place an X in Column B if you’ve used it but not in the past 12 months. Give only 1 answer for each drug, and remember that your answers will be kept strictly confidential. Column A
Column B
Yes, I’ve used
used this drug
this drug in the
but not in the
past 12 months
past 12 months
2. Other types of cocaine, like powder . . 3. Stimulants, like amphetamines, methamphetamines, or ecstasy . . 4. 2 or more drugs taken together, like cocaine and heroin, specify: ____________________________________________________________ . . SECTION E: HEALTH AND WELL-BEING
1. In general, would you say your health is… 2. Compared to one year ago, how would you rate your health in general now? Much better now than one year ago Somewhat better now than one year ago About the same as one year ago Somewhat worse now than one year ago Much worse now than one year ago 3. In the following table, record the number of hours you spend doing each activity in an average week. Number of hours
Activity
a. Strenuous activity such as aerobics, running, swimming, active sports, shoveling,
b. Moderate activity such as walking for exercise, cleaning house, gardening, carpentry, etc.
c. Slight activity, such as walking on level ground around the house, office, shopping, etc.
4. The following questions are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? If your activities are limited a lot, please indicate whether they are restricted on the
advice of your doctor.
Due to a doctor’s
limited limited limited recommendation?
Activity at
Example: riding a bike . . .
a. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports . . . b. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf . . . 5. During the past 4 weeks, how much of the time have you had any of the following problems with your work or other regular daily activities as a result of your physical health? A little of
a. Cut down on the amount of time you spent on work c. Were limited in the kind of work or other activities . . . activities (for example, it took extra effort) . . . 6. How much bodily pain have you had during the past 7. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? 8. How TRUE or FALSE is each of the following statements for you? Definitely
Don’t Mostly
Definitely
true true know
a. I seem to get sick a little easier than other people . . . b. I am as healthy as anybody I know . . . c. I expect my health to get worse . . . SECTION F: HEARING/VISION
SECTION G: SURGERY
1. Have you ever had any of the vascular or heart surgeries or procedures listed below? This includes all types of heart surgeries, including those on your No Î GO TO SECTION H
2. Does a hearing problem cause you difficulty when Please indicate the procedures you had by recording the year it was done. If you don’t remember exactly when it Surgical Intervention
3. Do you wear eyeglasses or contact lenses? 4. How would you rate your vision, without eyeglasses
5. Have you ever had any surgical procedure to correct or improve your vision? (Check all of the
procedures listed below that you have had.)
Yes, lens extraction and replacement Yes, implanted contact lens SECTION H: MEDICAL CONDITIONS
Has a doctor ever told you that you had any of the following conditions? Place a check in the appropriate column (No,
Yes or Don’t Know). For each YES answer, please provide your age at the time of diagnosis or procedure.
Condition No Yes Î Diagnosis
5. FBN1,TGFBR1,TGFBR2, ACTA2 or MYH11 genetic mutations . . . _________ . 6. Bicuspid aortic valve . . . _________ . 6a. Coarctation . . . _________ . 7. Shprintzen-Goldberg 7a. Thoracic aortic aneurysm or dissection . . . _________ . 8. Heart 10. Angina . . . _________ . 11. Heart attack . . . _________ . 12. Atherosclerosis, clogged arteries . . . _________ . 13. Heart, blood vessel infection (endocarditis) . . . _________ . 14. Cardiomyopathy or heart failure . . . _________ . 15. Congenital heart disease, specify: _________________________ . . . _________ . 16. Other heart disease, specify: _____________________________ . . . _________ . 17. Hypertension, high blood pressure . 18. Stroke . . . _________ . 19. Aneurysms outside the aorta . . . _________ . 20. Asthma . . . _________ . 23. Pneumothorax or collapsed lung . . . _________ . 24. Other pulmonary or lung disease, specify: ___________________ . . . _________ . 25. Cancer, specify site: ____________________________________ . 29. Blood clotting disorder . . . _________ . 32. Raynaud’s syndrome (fingers turn purple when cold) . . . _________ . 34. Problems with digestive system, specify: ____________________ . 40. Autoimmune disease, specify: ____________________________ . . . _________ . 41. Joint dislocations, specify sites: ___________________________ . . . _________ . 45. Memory loss/problems. . . _________ . SECTION I: PRESCRIPTION MEDICATIONS
1. These next questions are about prescription medications. Place an X in Column A if you’ve never taken the medication, Column B if you are currently taking the medication, or Column C if you’ve used it in the past but are not
using it now. If you don’t know if you’ve use it, place an X in the last column. Include only those medications that you
usually take at home. Do not include those you may have been given only during a recent hospitalization or
emergency room visit.
Column A
Column B
Column C Column
D
taken this
I don’t
I’ve never
I’m taking
in the past
know if I’ve
this this
but not now taken
a. ACE-inhibitors
Such as: benazepril (Lotensin), captopril (Capoten), enalapril (Vasotec), fosinopril (Monopril), lisinopril (Prinivil, Zestril), moexipril (Univasc), perindopril (Aceon), quinapril (Accupril), ramipril (Altace), trandolapril (Mavik) . . b. Angiotensin Receptor Blockers
Such as: candesartan (Atacand), eprosartan (Tevetan), irbesartan (Avapro), losartan (Cozaar), telmisartan (Mycardis), valsartan (Diovan) . . c. Beta Blockers
Such as: acebutolol (Sectral), atenolol (Tenormin), betaxolol (Kerlone), bisoprolol fumarate (Zebeta), carteolol hydrochloride (Cartrol), carvedilol (Coreg), labetalol (Trandate), metoprolol tartrate (Lopressor), metoprolol succinate (Toprol-XL), nadolol (Corgard), penbutolol sulfate (Levatol), pindolol (Visken), propranolol hydrochloride (Inderal, Inderal LA) . . d. Diuretics
Such as: bumetanide (Bumex), chlorothiazide or CTZ (Diuril), eplerone (Inspra), furosemide (Lasix), hydrochlorothiazide or HCTZ (Hydrodiuril), indapamide (Lozol), metolazone (Mykrox, Zaroxolyn), spironolactone (Aldactone), torsemide (Demadex) . . e. Calcium Channel Blockers
Such as: amlodipine (Norvasc), bepridil (Vascor), diltiazem (Cardizem), felodipine (Plendil), isradipine (Dynacirc), neifedipine (Adalat, Procardia), nicardipine (Cardene), nimodipine (Nimotop), nisoldipine (Sular), verapamil (Calan, Isoptin) . . f. Statins
Such as: atorvastatin (Lipitor), fluvastatin (Lescol), lovastatin (Mevacor), pravastatin (Pravachol), rosuvastatin (Crestor), simvastatin (Zocor) . . g. Alpha Blockers
Such as: alfuzosin (Uroxatral), doxazosin (Cardura), prazosin (Minipress), tamsulosin (Flomax), terazosin (Hytrin) . . h. Other Medications
SECTION J: PREGNANCIES
The next questions are about any pregnancies you have had. 2a. On average, about how many aspirin tablets do No Î FORM COMPLETE
Yes
IF YOU ARE A MALE, CHECK THIS BOX:
3. How many times have you been pregnant? Please be sure to include any pregnancies that ended in a live birth, miscarriage, stillbirth, or abortion, as well FORM COMPLETE.
_______ Number of times you have been pregnant (Continued on next page)

As you answer the following questions, please think about each of your pregnancies. Start with your very first pregnancy, listing it in the column labeled “1st pregnancy”. From there, work forward until you have provided information about all of your pregnancies, ending with the most recent. If you have been pregnant more than 6 times, please contact the coordinator for additional forms on which to record this information. 1st pregnancy
2nd pregnancy
3rd pregnancy
|___|___|-|___|___|___|___| |___|___|-|___|___|___|___| |___|___|-|___|___|___|___| (If currently pregnant,
enter your due date.)
(Check all that apply.)
(If you were pregnant with
multiples, check all that
apply and enter the
number of babies with
that outcome.)
The following are questions about your health during and after each of your pregnancies. 1st pregnancy
2nd pregnancy
3rd pregnancy
4th pregnancy
5th pregnancy
6th pregnancy
|___|___|-|___|___|___|___| |___|___|-|___|___|___|___| |___|___|-|___|___|___|___| (If currently pregnant,
enter your due date.)
(Check all that apply.)
(If you were pregnant with
multiples, check all that
apply and enter the
number of babies with
that outcome.)
The following are questions about your health during and after each of your pregnancies. 4th pregnancy
5th pregnancy
6th pregnancy
Thank you for completing this form.
You have made a valuable contribution to the GenTAC Registry.
Please return your completed form to the research staff.
This form will be mailed to the Data Coordinating Center for data entry.

Source: https://gentac.rti.org/Portals/0/Form_2_Enrollment_Patient_Questionnaire_SHORT_VERSION_2_formatted_rev4.pdf