About the Study
This NIH funded project is designed to improve our understanding of brain and behavioral growth in boys during a critical time in their development.
Information gained from this research will improve our understanding of learning, behavioral, and emotional development, ultimately facilitating the development of more specific and effective intervention services/therapies for boys with Klinefelter syndrome in the future.
Remote visits
To reduce the amount of in-person testing that is needed for our study and to help keep our staff and families safe, we are now completing most of our testing procedures remotely over video chat!
All eligible families (both local and traveling families) are invited to complete 4-5 video testing sessions to complete several of the behavioral questionnaires and cognitive assessments. After remote testing is complete, all families are invited for an abbreviated in-person visit to complete the remaining cognitive assessments, pubertal measurements, blood testing, and MRI scanning.
As much of our testing is completed remotely now, please help us stay productive while making your contribution to scientific progress from the comfort of your own home!
Who can participate
We are currently recruiting male adolescents:
- 8-17 years old
- With typical development OR with confirmed non-mosaic Klinefelter syndrome (47, XXY)
What participation includes
This is a longitudinal study, requiring a total of 4 annual study visits. At each yearly visit, participation includes:
For the child -
- Cognitive and behavioral assessments
- Questionnaires and interviews to be completed with trained researchers
- Brain imaging via Magnetic Resonance Imaging (MRI) –MRI scans are safe, non-invasive, and do not involve X-rays. They are primarily used to look at the structures of the brain. However, because MRIs involve magnets, we cannot include anyone with metal in their bodies, like braces or other metal implants.
- Physical exam by an endocrinologist to check pubertal development - includes measurements like height and weight and briefly looking at and measuring genitals
- Small blood draw (1 vial) to check hormone levels
For the parent -
- Questionnaires and interviews regarding your child and self - either administered by trained staff member or answered independently
- Cognitive assessment
What the potential benefits are
- After each yearly visit, all families are provided with a detailed report discussing the results from cognitive and behavioral evaluations
- Early access to study outcomes
- Flight/hotel/ground transportation and food costs are covered for the participating child and one caregiver or parent
- Families will receive an honorarium of up to $150 for their participation (plus prizes and a picture of your child's brain)
How long the visits take each year
Updated procedures due to COVID-19
Remote Testing
All eligible families (both local and traveling families) are invited to complete four to five 2-hour video testing sessions to complete several behavioral questionnaires and cognitive assessments. These are all completed over Zoom at times that are convenient for our participants.
Abreviated In-Person Testing
Once remote testing is complete, families are invited to Stanford University's campus to complete an abbreviated in-person visit. During this visit, we complete the remaining cognitive assessments, physical exam, blood draw, and MRI scan. Some families may also be asked to go to a local testing facility (Quest Diagnostics) to complete the blood draw. This in-person testing takes 3-4 hours to complete.
To learn more about how we are working to keep our families and staff safe during these sessions, please click here.
Travel Families
Traveling families are invited for abbreviated in-person testing as well! For families that travel to us, we are able to cover the cost for one child and a parent to fly or drive to our campus. Additionally, we are able to cover 1-2 nights at a local hotel depending on your preference and travel plans. Some traveling families may also be asked to go to a local testing facility (Quest Diagnostics) to complete a blood draw.
For general information about participant rights, contact 1-866-680-2906
