This observational study will help researchers better understand the everyday movements and activities of infants with Down syndrome and track their motor skills over time.
Who can participate in this study?
Your infant may be eligible if he or she…
- Has a confirmed diagnosis of Down syndrome (Trisomy 21)
- Is younger than 4 months old (adjusted for prematurity)
- Lives in the United States
Who cannot participate in this study?
Infants with mosaic or translocation Down syndrome, severe, uncontrolled medical problems including heart disease with cardiovascular instability, epilepsy, or uncorrected hearing or vision impairments, and families that reside outside of the United States.
Where does this study take place?
- Two 90 minute play-based data collections in your home (in-person or on Zoom)
- All momentary assessments will be completed on a mobile research application
What activities are involved in this study?
- 14 total days of momentary assessment when baby is about 4 months and 6 months old
- Surveys 5x per day about what your baby is currently doing
- Videos of baby’s natural movements
- Two 90 minute in-person sessions in your home (in-person or via Zoom)
- Motor skill assessments
- Babies and caregivers will be video recorded while playing together
- Movement detection using wearable sensors similar to a smartwatch
- Monthly updates on the services your baby receives and on their language and motor development
- Continue these until your child begins to walk or turns 36 months old
What is the expected time commitment of this study?
We expect that you/ your child will be in this research study until they begin walking (that is, can walk 15ft unsupported) or are 36 months old, whichever comes first.
What languages does this study support?
English
Is compensation provided?
Yes
If you are interested in participating in the Moving Forward study, please complete this short interest survey. If you have any questions, please contact the research team at buicl.studies@gmail.com.