To fully understand the clinical trial that has been proposed, here are some important questions to ask the oncologist:
• What is the purpose of the study?
• Who is sponsoring the study? Who reviews it? How often is it reviewed? Who monitors patient safety?
• What tests and treatments will be done during the study? How do these differ from standard treatment?
• Why is it thought that the treatment being studied may be better than standard treatment?
• What are the possible benefits?
• What are all possible disadvantages?
• What are the possible side effects or risks of the study? What are the side effects of the study compared to those of standard treatment?
• How will the study affect my child's daily life?
• What are the possible long-term impacts of the study compared to the standard treatment?
• How long will the study last? Is this shorter or longer than standard treatment?
• Will the study require more hospitalization than standard treatment?
• Does the study include long-term follow-up care?
• What happens if my child is harmed as a result of the research?
• Compare the study to standard treatment in terms of possible outcomes, side effects, time involved, costs, and quality of life.
• Have insurers been reimbursing for care under this protocol?
When discussing the clinical trial with the oncologist, you'll need the information to review later. Many parents bring a tape recorder or a friend to take notes. Some parents write down all of the doctor's answers for later reference.
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