Patient Risk Tolerance- Cure Studies

 
We appreciate you taking the time to answer this survey. Your answers could help researchers, drug companies, the community and the U.S. Food and Drug Administration (FDA) proceed with cure-oriented research more swiftly and with greater confidence, and we intend to share the results publicly when the surveys have been collected and analyzed. This survey is intended for people who are HIV-positive and aware of their status. If you have not received confirmation that you are HIV-positive, please do not take the survey.

If you would like to read more about the kinds of cure-oriented study approaches that are under consideration before taking the survey go to http://www.projectinform.org/news/a-primer-on-what%E2%80%99s-up-with-cure-research/

The survey should take approximately 5 to 10 minutes to complete. You will be asked to provide your name and email address at the end (optional and not required) if you want to be included in a drawing for gift certificates. Thanks again for your help and time.
1. YOUR PREVIOUS EXPERIENCES WITH HIV RESEARCH:

Have you ever participated in a clinical trial for an HIV medication or another type of medication?

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2. If you participated in the clinical trial, did you feel you were adequately warned about the potential risks?
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3. If you participated in a clinical trial, what was your overall experience?
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4. If you participated in a clinical trial, how much did you think you might benefit from the medication or procedure being tested?
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5. YOUR THOUGHTS ABOUT PARTICIPATING IN FUTURE HIV RESEARCH STUDIES, PARTICULARLY EARLY STUDIES DEVOTED TO ERADICATION OR CONTROL OF HIV THAT COULD CARRY HIGHER RISK THAN STANDARD ARV STUDIES:

Assuming that entering a study might pose health problems and other risks, how much would the chance to benefit others by participating in the study motivate you to join the study?
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6. Assuming that entering a study might pose health problems and other risks, how much would the chance to benefit yourself by participating in a study motivate you to join the study?
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7. Assuming that entering a study might pose health problems and other risks, how important would it be to compensate you for your time and discomfort?
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8. Assuming that entering a study might pose health problems and other risks, if you were aware that you would probably not benefit from a new drug or procedure being studied, but that your participation in the study might advance the field of HIV research, how willing would you be to participate?
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9. If a study would require you to go off of your HIV medication for a period of time, which might carry health risks, how willing would you be to participate?
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10. How would you characterize your current health?
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11. How much would your current health affect your willingness to participate in studies that may eventually lead to a cure for HIV?
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12. QUESTIONS ABOUT YOU:

How long have you known that you are HIV positive?
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13. What is your gender identification?
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14. What is your age?
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15. Are you Latino (Hispanic)?
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16. What is your race?
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17. What is your employment status?
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18. What is the last year of school you completed?
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19. What is your average yearly income?
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20. When it comes to the science of HIV—how HIV infects cells, causes disease and persists in the body—how knowledgeable do you feel?
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21. QUESTIONS ABOUT YOUR HEALTH:


What is your current HIV viral load?
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22. What is your current CD4 count?
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23. What was your lowest ever CD4 count?
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24. How many antiretroviral (ARV) medication regimens have you taken since you were diagnosed with HIV? Please count the times you had to switch medications due to HIV resistance or side effects, even if you only switched some of the drugs in your regimen.
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