Participation in these studies enables families to contribute directly to the research effort. The benefits of volunteering would include an opportunity to be evaluated by an expert on the disorder. Specific studies may provide additional information that may be useful to the patient and his or her family.

Before putting your child in a study, JBRF suggests you ask questions to help determine whether participation is in your child’s best interests. The National Institute of Mental Health suggests the following Checklist of Questions:

Q: Why do you want my child in your study?

Q: What is the research about? How will this research help in treating or understanding my child’s disorder?

Q: What do I need to do as a parent and how much time will this take?

Q: How might this study help me, my child, relatives, or other people with this disorder?

Q: What possible risks are there to my child or my relatives if I take part?

Q: How will this be different from the care my child is getting now, and do I have other options or choices?

Q: Could my child’s illness become worse during the study? What will happen if it does?

Q: What will happen to my child at the end of the study?

Q: What should I do if I want to withdraw my child from the study?

Q: May I get back to you after I discuss this with my family/friend/case manager/doctor?

For more information, see the National Institute of Mental Health’s guidelines, Understanding Clinical Trials.