Down Syndrome Research Needs You
To better understand very early brain development in Down syndrome, we are recruiting 152 families who have an infant with Down syndrome. Study visits occur when infants are 6-months, 12-months, and 24-months of age. Each visit involves developmental testing and MRI scans when infants are naturally sleeping (no sedation or radiation). Study sites arrange travel and visits are scheduled at your convenience. Participate at no cost to you.
We can’t do that without you!
About the Study
This groundbreaking five-year, $11.5 million NIH-funded study will investigate very early brain development in infants with Down syndrome. By understanding brain development in babies with Down syndrome, researchers may develop therapies to improve outcomes for individuals with the genetic syndrome.
Who Can Participate
Families who have an infant 6-months of age or younger diagnosed with Down syndrome (full Trisomy 21).
Expectant parents encouraged to contact us.
Don’t have a child with Down syndrome but would like to help? We also need infants without Down syndrome for our control group.
Where to Participate
Study sites across the United States at the University of Washington in Seattle, Washington University School of Medicine in St Louis, Children’s Hospital of Philadelphia, and University of North Carolina in Chapel Hill.
Study sites arrange airline travel and hotel, reimburse for rental car or mileage and meals. Participate at no cost to you.
What is Involved in Participating in the Study?
| Before Visit | Complete Telephone Screenings Return consent for medical records Telephone interviews to arrange travel at your convenience |
| Day 1 | Families arrive at their study site and check in to hotel Arrive at testing site for MRI scan when infant is sleeping Return to hotel after scan |
| Day 2 | Arrive at study site for developmental testing Although over 90% of our infants successfully sleep through the first scan, a second night is reserved for a second attempt if needed |
| Day 3 | Travel home |
| After Visit | Submit receipts for meals and incidental expenses Pediatric neuroradiologist reviews MRI scans Receive check reimbursing for study expenses and $125 for participating Receive results report summarizing your visit Plan to come back for visit when infant is 12-months old |
This study, ‘A Longitudinal MRI Study Characterizing Very Early Brain Development in Infants with Down Syndrome’ is made possible by a grant from the National Institutes of Health (NIH) Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Down Syndrome Infant Brain Imaging Study © 2020