Families & Kids

Frequently Asked Questions

Can my child receive the medication at our doctor's office?

If your child is taking part in a Phase I or Phase II study the medication must be given at the office where the study doctor takes care of patients.

Can I withdraw my child from the trial at any time?

Taking part in a clinical trial is always voluntary so you may withdraw your child from the study at any time. The study doctor or sponsor of the study may also withdraw your child from the study at any time if they determine it is no longer safe for your child to take part in the study.

How long can my child take part in the trial?

Each trial is written differently and so the length of time a child stays on study will depend on the guidelines of the particular protocol and how the child is responding. On most studies, the child will continue to take part in the trial for as long as the cancer does not grow or spread.

How do I talk to my child about the trial?

This is a very personal decision. Most children deal better with honest information given at a level their age allows them to understand. If you are unsure how much to share or how to discuss the trial with your child, the study doctor, nurse or social worker can help guide you through the process.

How do I talk to my other children about the trial?

There is no one right answer. Each child is different and their ages and ability to understand will influence how much you share. Regardless of their ages, however, your other children will certainly be affected in some way by the changes your family is going through with a sick child. They may benefit from being included in some way and allowed to help. Resources are available to help your family at this time. Do not hesitate to ask your study doctor, nurse or social worker for assistance.

Can my child take other chemotherapy while taking part in the trial?

Again, each protocol is different, but for most trials this would not be permitted. The specifics of your child's particular study and any limitations will be fully discussed with you prior to signing consent.

Can my child take alternative medicines while taking part in a trial?

Most likely the answer will be no due to the concern that the alternative medicine might interact or interfere with the trial medication.

Who pays for the cost of the trial?

If the trial is requesting any special tests or procedures they are usually paid for by the trial sponsor. Your insurance company will be charged for tests or procedures that would normally be done in order to practice safe care.

Why does my child need an extra IV for the study if he/she already has a central line?

Some trials will ask for extra blood work to be drawn to learn how the drug is working in the body. These blood samples should not be obtained from the same IV or central line that is used to give the study medication because medication in the line itself will change the results. For these times, an additional, temporary IV is inserted.

What can I expect once my child is taking part in the trial?

You study doctor and nurse will discuss the events and procedures with you in detail before starting the study. You will be given a schedule of when to come to the clinic for treatments and required tests.

What can I expect after the trial is complete?

When you child has completed taking part in the study the study doctor will continue to follow your child's care for at least a month or longer if your child has a serious illness that needs to be followed.

Should my child take part in a clinical trial?

Your study doctor will meet with you to discuss the details about the trial and answer your questions, giving you the information you need to make the best possible choice for your child. This is very individual and there is no one right answer for everyone. You will be given a copy of the consent to take home to read over and discuss with family to help you come to a decision.

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