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Rights of Families in Studies

You're being asked to enroll your child in a study.

You've seen a lot of information; you've talked to the research team. You know you have rights but would like to know a little more about them.

When you are thinking about joining a study, remember that you have the right to:
  • Join a research study only if you want to. You should never feel pressured or forced to join.
  • Be told about all the known or possible risks and benefits of the treatments in the study.
  • Full and complete information about what the study means for your child, what is expected of you and how the study will be done.
  • Ask questions about the study before you start and as the study goes on.
  • Know about any costs to you or your insurance company.
  • Know about other treatment options, if any exist, and their risks and benefits.
  • Privacy and to know about how your personal information will be shared and protected.
  • Be given a copy of the signed and dated written informed consent form when one is required.
  • Know about any new information that the researchers may learn about the treatments while the study is going on.
  • Leave a research study whenever you want. You should never be pressured to stay in a study. You cannot lose access to your regular medical care if you leave a study.

These rights are in place to make sure that you feel that your child is protected and that you have control over the decisions made about medical care and being in a study.
"...just [make] sure that at least you as a parent are comfortable, that you understand to the extent that you want to understand, that you're able to make the decision that you think is right for you and for your child."
Dr. David Wendler, Clinical Bioethicist

Terms You Should Know
Informed Consent: A parent's guide to learn key facts about a research study.