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. Author manuscript; available in PMC: 2011 Jul 15.
Published in final edited form as: Pediatr Blood Cancer. 2010 Jul 15;55(1):113–118. doi: 10.1002/pbc.22411

Table I.

Excerpts from DVD Script

Topic Excerpts from Script
Goals of Research and
Treatment
The goal of research is to develop scientific knowledge that can
make a positive impact in the care of other patients in the future.
The goal of treatment is solely devoted to the medical care of
the individual patient. The care of each child will always take
priority over the goals of research, but it is important to
understand this difference.
Possible Differences
Between Research and
Current Therapy
Most of the drugs would be given to your child as part of
current therapy whether or not you participate in a research
study. In some research studies, treatment may be longer or
shorter than current therapy or involve more trips to the hospital
or clinic.
Voluntariness Participation in a research study is strictly voluntary. Once you
have learned about a research study and all that it involves, you
and your family can decide whether or not to participate. If you
decide not to participate in the treatment study, your child can
continue to receive treatment at this hospital. The doctors and
nurses will be just as committed to caring for your child whether
you decide to participate or not.
Randomization A participant in a Phase III research study will usually be
assigned to the current therapy or one of several new groups by
a process called “randomization,” which is like flipping a coin
or picking a number from a hat. In most research studies for
childhood leukemia, the treatment for your child will be
determined by chance. Neither you nor your doctor will make
the exact treatment decision if you decide that your child will be
in one of these research studies.
Right to Withdraw If you decide to enroll your child in a research study, you may
withdraw from that research study at any time without any
explanation and without any penalty.
Communicating
Preferences for ICC
If you would prefer a private room, is there a family member
that you would like to stay with your child? You can also ask
the doctor or nurse to arrange for someone like a child life
specialist to stay in the room with your child.
Consent Document The doctor will be giving you a packet about the research study
which is called an informed consent document. We encourage
all parents to read this informed consent document or ask
someone to read it to you. Please feel free to write on the
document and ask the doctor about anything that is unclear.
Question Asking The doctors want you to ask questions, and they want to be sure
that you understand the information they are giving you. So be
sure to let the doctor know what questions you have. It may be
easier to write down your questions before your meeting or jot
down notes and questions as you talk.