Research Study Participation

Should My Child Participate in a Research Study?

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.

Ready For More Information About Current Studies?

I am interested in participating in research studies and would like to find out more about specific studies that are being conducted and how I can enroll my child.

The Clinician’s Pathway Program (CPP) and its assessment tools, the CBQ and JJ, were developed by Dr. Demitri Papolos. By clicking the links below you will leave www.jbrf.org and be redirected to the research site that contains the CPP and the CBQ & JJ assessments. If you have any questions or concerns regarding these tools please direct them to Dr. Papolos’s system administrator at CPP@drpapolos.com

To Set Up a New CPP Account

To Access an Existing CPP Account

Scoring for assessments within the CPP is a fee-based service offered by the private practice of Demitri Papolos, M.D.; this service is independent of JBRF but may be accessed through the JBRF website. Dr. Papolos developed the CBQ & JJ measures and their automated scoring report with the support of JBRF. Questions and/or concerns with regard to the scored report should be addressed to CPP@drpapolos.com