Considering a Clinical Trial?

You should feel free to ask any questions or discuss any issues about the study at any time. When talking to your doctor you may wish to ask the following questions:

The Study

1. What is the purpose of the study?

2. Why do researchers think the approach will benefit patients?

3. Who will sponsor the study?

4. Who has reviewed and approved the trial?

5. How will scientists check the study results and safety of participants?

6. How long will the study last?

7. What will I be responsible for if I participate?

Risks and Benefits

1. What are my possible short-term benefits?

2. What are the possible long-term benefits?

3. What side effects are a short-term risk?

4. What are my possible long-term risks?

5. With my type of tumor (or tumor risk) what other options do I have?

6. How do the potential risks and benefits of this trial compare with those options?

Participation and Care

1. What kinds of treatments, procedures and/or tests will I have during the trial?

2. Will they hurt, and if so, for how long?

3. How do the tests in the study compare with those I would have outside the trial?

4. While in the trial will I be able to take my regular medications?

5. Where will I receive my medical care?

6. Who will be in charge of my care?

Personal Issues

1. Could participation in this trial affect my daily life?

2. Can I talk to other people already enrolled?

Cost Issues

1. Will I have to pay for any part of the trial such as tests or the study drug?

2. If so, what will the charges likely total?

3. What will my health insurance plan now cover?

4. Who in the study can answer questions from my insurance company?

Tips for Talking with your Doctor

1. Let your doctor know you need to set aside time for a discussion.

2. Take along a family member or friend for support and for help in asking questions or remembering answers.

3. Plan ahead: bring a list of questions, but don’t hesitate to ask any new questions that may occur to you.

4. Write down your doctor’s answers so you can review them later.

5. Consider bringing a tape recorder.

Editor’s note: For additional tips on doctor/patient communications, order a free copy (plus $2 posage) of the publication "TEAMWORK: A Cancer Patient’s Guide to Talking with your Doctor" from the National Coalition for Cancer Survivorship by calling 1-877-NCCS-YES (1-877-622-7937) a free call in the U.S. See also the book How Are You? Manage Your Own Medical Journey by Patricia Foote available from the VHL Bookstore at http://www.vhl.org/bookstore.

Reprinted with permission from In Touch Cancer Prevention and Treatment: The Good Health Guide, June/July 1999.

As printed in the VHL Family Forum 7:4, December 1999. Further information is available from the VHL Family Alliance, info@vhl.org.