Questions to ask about clinical research

Tips for learning about a clinical research study

Before you and your child take part in clinical research, you will meet with at least one (1) member of the research team. Here are some tips for meeting with the doctor or other research team members.

  • Think of the questions you want to ask before your appointment. Write them down so you remember them all.
  • Ask any new questions you think of during your appointment.
  • Take a family member or friend along. They can help you stay calm, feel more confident, and remember your questions. They can also help you write down or remember the answers.

The rest of this page gives you some questions to ask about taking part in clinical research. You might also want to read “Taking Part in Clinical Research” and “Phases of Clinical Research.”

Questions about the clinical research study

  • Why are scientists doing this study?
  • Why do they think this treatment might work?
  • Who is paying for scientists to do the study?
  • Who has reviewed and approved the study?
  • Who checks to make sure children taking part in the study are safe?
  • How long will the study last?
  • What am I responsible for if my child takes part?

Questions about possible risks and benefits

  • What are the possible short-term benefits to my child from this study?
  • What are the possible long-term benefits to my child from this study?
  • What are my child’s short-term risks, such as side effects?
  • What are my child’s long-term risks?
  • What other treatment options does my child have?
  • How do the risks and benefits of taking part in the study compare to the risks and benefits of my child’s other treatment options?

Questions about my child’s care

  • What treatments, procedures, and tests will my child have in this study?
  • Will they cause pain? If so, for how long?
  • How do the tests in this study compare with those my child would have with other treatment options?
  • Can my child take their regular medicines while they take part in the clinical trial?
  • Where will my child have medical care?
  • Who is in charge of my child’s care?

Questions about personal issues

  • How could being in this study affect my child's daily life?
  • Can I talk to the parents of other children in the study?

Questions about cost

  • Will I have to pay for any part of the trial, such as tests or the study drug? If so, what are the charges likely to be?
  • What is my health insurance likely to cover?
  • Who can help answer questions from my insurance company or health plan?
  • Do I need to consider travel or child care costs during the trial?

Questions?

Ask your child’s doctor or nurse if you have questions about your child taking part in clinical research. You may also ask a St. Jude social worker or the research participant advocate. The research participant advocate can help answer questions about your rights if you or your child is in a research study. To reach the research participant advocate, call 901-595-4644. If you are outside the Memphis area, dial 1-866-JUDE IRB (1-866-583-3472).