Questions to Ask the Research Team

Meeting with your research and care team can be stressful and overwhelming. In many cases, you may have a short amount of time to gather and discuss information. It can help to prepare for these appointments. Go with a plan and have questions ready for your providers.

These tips can help when you and your child meet with members of the research team:

• Take a family member or friend along for support. They can also help ask questions or take notes.
• Plan what you want to ask ahead of time.
• Ask any new questions that you think of while you are there.
• Write down questions in advance to make sure you remember to ask them all.
• Write down the answers your provider gives. This way, you can review them whenever you want.
• Your institution may have a research participant advocate who can talk with you about the research study. They are not part of the research study team. They can talk with you about problems, concerns, and questions related to the study. They will share your input with the research study team and the Institutional Review Board (IRB). The IRB reviews every new clinical research study before the study starts. Learn about taking part in clinical research.

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?
• If my child takes part, what will I be responsible for?
• What if we decide we don’t want to continue the trial after the study begins?
• Can we leave the trial at any point?
• How will the trial results be reported? Will I be told?
• What information is shared?
• How is my child’s 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 medical care in a clinical trial

• What kinds of therapies, procedures, and tests will my child have during the trial?
• Will the treatment or tests cause pain? 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?
• What will happen to my child's cancer without treatment?

Questions about daily life

• 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 costs

• 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 childcare costs that I need to consider during the trial?

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