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 approach may work?
- Who will pay for the study?
- Who has reviewed and approved the study?
- How are study results checked?
- Who checks the safety of those who take part?
- How long will the study last?
- What will I be responsible for if my child takes part?
Questions about possible risks and benefits
- What are my child’s possible short-term benefits?
- What are my child’s possible long-term benefits?
- What are my child’s short-term risks, such as side effects?
- What are my child’s possible long-term risks?
- What other options do people with my child’s illness or disease have?
- 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 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?
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?