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Questions You May Want to Ask the Research Team

At Seattle Children's, we want to support families in making informed decisions about participating in a research study. We realize that it is sometimes difficult for families to determine what information they need or what questions to ask before making a decision about research participation.

Here are some questions parents have found helpful.  The answers to some of these questions may be in the consent form that explains the research study. Research team members are happy to answer any questions and want to help you make a decision that is right for you and your family.

Research and family liaisons are available to help make sure your questions are answered. They can also help you come up with questions you may want to ask.   

Why is this research study being done?

  • What is the goal of this study?
  • What do doctors hope to learn from this study?
  • Why do doctors think this study is a good idea?
  • Why is participating in this study an option for me or my child?

What is involved in the research study?

  • What will participating in the study look like?
  • Are any of the procedures that are part of the study experimental?
  • How does the study differ from the standard care I or my child would usually receive?
  • How will the study impact our family life?
  • How many study visits will there be?  How long will the visits be?  What will the visits involve?
  • Will any part of this study require that I or my child stay in the hospital overnight?
  • How long will this study last?
  • Will I receive any results related to this study?
  • If we change our mind about participating, who do we talk to and how do we stop participating in a safe way?
  • Is there any reason this study would be stopped?
  • If I have questions about the study, who do I contact?
  • Will my child see the same doctor(s) that they usually do if they participate in the study?
  • Does my child have to agree in order to participate in the study?

What are the possible harms if we participate in this research study?

  • What are the possible short-term harms of the study?
  • What are the possible long-term harms of the study?
  • How likely are these possible harms?
  • If my child is hurt by taking part in this study, who will provide medical care for them?

What are the possible benefits if we participate in this research study?

  • Will my child benefit if they participate in this study?
  • What are the possible benefits of the study?
  • How likely are these possible benefits?

Are there any payments or costs for participating in the research study?

  • Will it cost me anything if my child participates in the study?
  • Will I or my child receive payment or a gift for participating in the study?
  • Who is paying for or sponsoring the study?

What about confidentiality?

  • What type of information will the study collect?
  • How will my or my child’s health information be protected?
  • Who will have access to our information?
  • Will my or my child’s participation be noted in the medical record?
  • How long will information that is collected during this study be kept?

Would the research study be part of my child’s treatment?

  • What options do I or my child have other than participating in this study?
  • What are the differences between the medications and procedures that are part of the study and what my child would usually receive?
  • Will all children in the study receive treatment?
  • Will all children in the study receive the same treatment?
  • How will my child’s treatment be decided?
  • Does the study involve “randomization”?  What does the term “randomization” mean for me and my child?
  • Will we know what treatment my child will receive?