Questions to ask your Research Doctor about your Child’s Participation in a Research Study

(You can print these questions by using the Print button at the bottom of this screen.)


  1. Why is this research study being done and what do the research doctors hope to learn?


  2. Why do researchers think the experimental treatment being tested may be effective?


  3. Have there been similar studies, and if so, what has been the outcome?


  4. How many participants will take part in this study?


  5. How many have been enrolled so far and what kind of results have you seen?


  6. Are all the participants from St. Jude or will there be participants from other hospitals also?


  7. What are the benefits of this study?


  8. What are the risks of this research study?


  9. What discomforts will my child experience while taking part in this study, and what will be done to help if my child becomes uncomfortable?


  10. What types of safeguards are available to protect my child while in a research study at St. Jude?


  11. What are other choices (standard treatments, other studies)? How do the possible risks, side effects and benefits of this study compare to current treatment?


  12. What types of tests or procedures will be done?


  13. How will I know which procedures are standard and which are experimental?


  14. Will my child need to be hospitalized during this research study, and if so, for how long?


  15. What will happen if I don’t want my child to take part in this research study? What happens if I say no?


  16. What happens if we change our mind once we have begun a research study? Can we take our child out of the study? How would we do this?


  17. Can my child be taken out of the study without my consent? Why would this happen?


  18. What kind of time commitment is involved? How many trips to St. Jude will be needed? How will the study affect my child’s daily life? Will my child be able to return to school?


  19. How long will my child be in this study?


  20. What are the possible long-term side effects from this treatment?


  21. What type of long-term follow up care is part of this study?


  22. What happens if new information is learned while my child is a part of this study?


  23. What about keeping my child’s records private (confidentiality)?


  24. Who can I contact if I have concerns or questions?


It is important that all your questions be answered – you should thoroughly understand what will happen to your child and why. During the informed consent discussion, you and the researcher will talk about the research study that your child is invited to join. Even after the informed consent discussion please remember that taking part in a research study is your choice, and that we welcome your questions at any time!