Offered by: Nemours Children's
Location: Delaware Valley
Brain and Behavior During Puberty in Klinefelter Syndrome
What is the trial about?
The purpose of this research study is to find out more about how the brain is involved in learning and behavior in children with Klinefelter syndrome, or 47,XXY. In this study, we hope to learn how testosterone therapy affects brain development in boys with Klinefelter syndrome during puberty.
Who can participate?
Your child can participate in this study if he is between the ages of 8 and 17 years old and has been diagnosed with Klinefelter syndrome (47,XXY) or has no known clinical diagnosis (typically developing boy).
What is involved?
This is a 4-year study. The procedures listed below will be repeated each year, up to 5 visits in total. The interview and tests will take about 4 to 6 hours to finish at each visit in addition to the MRI scan of the head.
If you and your child agree to participate in this study, Dr. Ross and her associates will ask you or your child to participate in the following tests:
Interview & Testing
You or your child will talk to a trained member of our staff. We will ask you questions and have you fill out forms about behavior and learning, including topics such as attention span, friendships and behavior problems. We will give you and your child paper and pencil, or computer tests, which measure learning skills, language and memory. The interview and tests will take up to 4 to 6 hours and this time will be divided into several sessions.
MRI Scan of the Head
This is a special examination of the head, which will create pictures of the structure and function of the brain. The total scan time will take approximately 1 to 2 hours. The hardest part of the scan is the need to lie still during the time they are in the MRI unit. In order to help, we may ask your child to come to one or more sessions to get used to the procedure before the actual MRI scan.
Body Measurements & Brief Physical Exam
A physician or physician assistant will conduct a brief physical exam of your child. During this exam, Dr. Ross and staff will record your child’s vital signs, height and weight and measure pubertal status.
A blood draw will be performed (approximately 1 tablespoon) to assess puberty hormones. You will not be told the results of your child’s blood sample tests although you will have access to information we may learn as a result of these tests on the entire group.
Learn more about this trial.