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Taking Part in Research Studies: What Questions Should You Ask

1. What is the study about?

  • Why are you doing this study?
  • Why do you want to study me or people like me? Who else is being studied?
  • What do you want to get out of this study?
  • What will you do with the results?
  • Have you or others done this type of study ever before? Around here?
  • What did you learn?

2. Who put this study together?

  • Who is running or in charge of this study?
  • Whose idea was this study?
  • How were people like me part of putting it together?
  • Who are the researchers? Are they doctors or scientists? Who do they work for?
  • Have they done studies like this before?
  • Is the government part of this study? Who else is a part of this study?
  • Who is paying for this study?
  • Who will make money from the results of this study?

3. How can people like me share their ideas as you do this study?

  • How will the study be explained in my community?
  • Who of people like me will look at this study before it starts?
  • Who of people like me are you talking to as you do this study?
  • A Community Advisory Board?
  • Who from the study can I go to with ideas, questions, or complaints?
  • How will people like me find out about how the study is going?

4. Who is going to be in this study?

  • What kinds of people are you looking for? Why?
  • Are you trying to get minorities in this study?
  • Are you including people less than 18 years old?
  • How are you finding people for this study?
  • Is transportation and/or daycare provided for people in this study?
  • Do I need to sign to participate?
  • Will you answer all of my questions before I sign the consent form?
  • Can I quit the study after signing the consent form?
  • If I quit the study, will anything happen to me?

5. What will I get out of this study?

  • What are the benefits?
  • Is payment involved? How will I be paid?
  • Will I get free health care or other services if I participate? For how long?
  • Will I get general health care and/or psychological care if I participate?
  • For how long?

6. How will I be protected from harm?

  • Do I stand a chance of being harmed in this study? In the future?
  • Does the study protect me from all types of harm?
  • If I get harmed, who will take care of me? Who is responsible?
  • If I get harmed in any way, will I get all needed treatment?
  • Who pays for treatment?

7. How will my privacy be protected?

  • Who is going to see the information I give?
  • Will my name be used with the information?
  • What happens to the information I gave if I quit the study?
  • Is there a written guarantee of privacy?

8. What do I have to do in this study?

  • When did you start this study? How long will it last?
  • How much of this study have you already done?
  • Have there been any problems so far?
  • Will I get treated the same as everyone else?
  • What kinds of different treatments are offered in this study?
  • Is there a real and a fake treatment?

9. What will be left behind after the study is over?

  • What will happen to the information people give? How will it be kept?
  • What are you going to do with the results of the study?
  • How will the public learn about the results?
  • Will results be in places where the public can see them?
  • Are you going to send me a copy of the results? When?
  • What other studies are you planning to do here?

Adapted from information prepared by:

U.S. National Library of Medicine
8600 Rockville Pike
Bethesda, MD 29894
National Institutes of Health

Last Reviewed: July 1, 2003

Evaluated and endorsed by:

Michael   Privitera, MD Michael Privitera, MD
Professor of Neurology
College of Medicine
University of Cincinnati