Down Syndrome Research Needs You

An image of a young child with down syndrome

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

Three images, a woman with her son, a suitcase, and results of a brain scan. Below the images is text that reads "152 families needed" "3 study visits per family" "456 insights into DS Brain Development"

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

An image of a father with his older looking over his shoulder at the young infant he's holding.

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.

A map of the United States color coded for each region. Families in the West Coast contact the University of Washington in Seattle at 206-543-2125 or at ibisstudy@uw.edu. Families in the midwest contact Washington University in St. Louis at 888-845-6786 or at ibis@wustl.edu. Families in the south contact the University of North Carolina at 919-843-1331 or at ibisnetwork@cidd.unc.edu. Families in the East Coast contact the Children's Hospital of Philadelphia at ibis@email.chop.edu

What is Involved in Participating in the Study?

Complete Telephone Screenings
Return consent for medical records
Telephone interviews to arrange travel at your convenience
Day 1Families 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 2Arrive 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 3Travel home
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