Questions to Ask your Clinical Team

New to Learning about Clinical Trials?

Considering Trial Participation?

Specific Trial Information

In order to help you prepare for meeting with the research team it may be helpful to do the following:

  • Plan ahead and write down possible questions to ask.
  • Ask a friend or relative to come along for support and to hear the responses to questions.
  • Bring a tape recorder to record the discussion to replay later.
  • You may also want to download the Clinical Trial Decision Guide and complete that to help aid the discussion

You and your family should know as much as possible about the research study or clinical trial and should feel comfortable asking your health care team questions. There are different types of clinical trials, including those that follow people with the condition for years to learn about it (see the Natural History Trials video for more info), genetic studies that use blood from multiple family members to find genetic changes that cause the condition (genetic studies), and studies that test new treatments (treatment trials). It is important to ask the study team questions about the goals of the trial and the likelihood of any benefits during and after the trial.

Below are some questions to include:

The study:

    • What is the purpose of the study? (see more info on Types and Phases of clinical trials)
    • Why do the researchers think the approach being tested will work?
    • Who is going to be in the study? (learn more about exclusion/inclusion criteria)
    • Has this test/intervention/treatment been tested before?
    • Who is sponsoring the study?
    • Who has reviewed and approved the study?
    • What are the medical credentials and experience of the researchers and other study personnel?
    • How are the study results and safety of the participants being monitored?
    • How will the results of the study be shared? Will the results be provided to me?
    • Is there a placebo arm of the study? If so, will I know if I am receiving a placebo or not? (see "Placebo" video for more info)

Participation and Care: (see video "Trial Logistics" for more info)

    • What kinds of tests and experimental treatments are involved? Will hospitalization be required?
    • What is the frequency of tests/treatments?
    • How do the tests in the study compare to the normal care?
    • Will I be able to take my regular medicine while in the study?
    • Where will I receive my medical care and who will be in charge of it? Can I still see my own doctor?
    • Will treatments, tests, or procedures be painful? And if so, can the pain be controlled?
    • How long is the study?
    • Are there follow-up visits after the study is complete?

Personal Issues: (see video "Trial Logistics" for more info)

    • How might this trial effect my daily life? How will it impact the rest of the family?
    • Is there support for people in the study and their families?
    • Can I talk to with people who are already in the study?

Cost Issues: (see video "Trial Logistics" for more info)

    • Who will pay for the experimental treatment? If I am responsible for any costs what will the approximate charges be?
    • Will I be reimbursed for expenses such as travel? And if so, how is that done?
    • What is health insurance likely to cover?
    • Who can help answer questions from the insurance company or health plan?

Possible Risks and Benefits: (see the following videos for info on this topic: "Benefits", "Risks" and "Managing Expectations")

    • 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 other possible long term risks?
    • What other treatment options are available?
    • How do the possible risks, side effects, and benefits in the study compare with my current treatment?