Questions to Ask the Research Team

These tips might help when you and your child meet with the doctor or other members of the research team:

• Take a family member or friend along for support and for help in asking questions or recording answers.
• Plan what you want to ask ahead of time.
• Don’t hesitate to ask new questions that you think of while you are there.
• Write down your questions in advance to make sure you remember to ask them all.
• Write down the answers so you can review them whenever you want.

Questions about the clinical trial

• What is the purpose of the study?
• Why do researchers think this treatment may work?
• What other related research has been done with these types of treatments?
• Who is providing the funding for this research?
• Who has reviewed and approved the study?
• How is the study monitored for results and safety?
• How long will the study last?
• What will I be responsible for if my child takes part?
• What if we decide we don’t want to continue the trial after the study begins?
• How will the results be reported?
• What information is shared, and how is information kept confidential?

Questions about possible risks and benefits

• What are the possible short-term benefits?
• What are the possible long-term benefits?
• What are the short-term risks, such as side effects?
• What are the possible long-term risks?
• What other treatment options are available if we choose not to participate?
• How do the possible risks and benefits of this trial compare with those other treatment options?

Questions about taking part in a clinical trial and the medical care

• What kinds of therapies, procedures and tests will my child have during the trial?
• Will they cause pain, and if so, for how long?
• How do the tests in the study compare with those my child would have if my child did not take part in the trial?
• Will my child be able to take his or her regular medicines or other treatments while in the clinical trial?
• Where will my child have his or her medical care?
• Who will be in charge of my child’s care during the trial?

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 issues

• 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 any questions from my insurance company or health plan?
• Will there be any travel or child care costs that I need to consider during the trial?