Infant Down Syndrome Brain and Behavior study
Official title: The Infant Down Syndrome Brain and Behavior Study
Funded at Washington University · NIH-11545573 · Data updated 2026-11-12
This project will enroll infants with Down syndrome to collect brain scans, health data, and biosamples to understand early brain development and behavior, with results shared to help families and clinicians in the future.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Washington University NIH-funded |
| Lab location | 1 site (Saint Louis, United States) |
| Project start | June 1, 2026 |
| Project end | May 31, 2029 |
| Funding year | 2026 |
| Award (this year) | $2,262,160 |
| NIH project number | 4U01HD116463-02 |
| Project ID | NIH-11545573 on NIH RePORTER |
Who could benefit from this research
✓Could help
Infants with Down syndrome starting in early infancy, and their families, who can participate in imaging, biospecimen collection, and longitudinal assessments.
✕Less likely to help
Families not participating may not directly benefit from this specific study, though findings could influence future care broadly.
What this research studies
Families with infants who have Down syndrome can help researchers learn how early brain development relates to behavior by contributing imaging, health information, and biosamples. The study builds on a long-running network of institutions to recruit infants, gather comprehensive data over time, and create a shared resource for scientists. By increasing the number of DS infants in the dataset and standardizing measurements, researchers aim to identify developmental subtypes and potential factors that influence outcomes. Results could inform better monitoring, early interventions, and personalized care strategies for DS in early life.
Why it matters
Potential benefit: If successful, the study could lead to earlier identification of developmental needs and more tailored supports for children with Down syndrome.
How similar studies have gone: This work builds on an established infant brain imaging network and aims to expand data and subtyping, which has shown promise in understanding diverse developmental trajectories.
Where this research is happening
-
Washington University
Saint Louis, United States Active
Researchers
- Principal investigator: Marrus, Natasha — Washington University
- Study coordinator: Marrus, Natasha
Related research
Other NIH-funded projects on the same topics.
-
Exploring how Down syndrome affects optic nerve health in kids
A study using a mouse model to understand why optic nerve problems are common in children with Down syndrome and how to prevent them.
-
Executive Function Enhancement for Young Children with Down Syndrome
A caregiver-guided program for kids with Down syndrome aged up to 11 to strengthen their thinking skills during early childhood.
-
Silencing an Extra Chromosome to Help Down Syndrome and Related Conditions
A patient-friendly plan to use a gene-based approach to quiet an extra chromosome in cells and a mouse model to reduce disease-related effects in Down syndrome and other chromosomal imbalance disorders.
-
Infant Down Syndrome Brain and Behavior Study
A study of infants with Down syndrome to collect brain imaging and developmental data, creating a large, shared resource to understand how autism and other factors relate to development.
-
DS-ARC: Smartphone-based cognitive check for people with Down syndrome at risk for Alzheimer’s
A smartphone-based cognitive test is being developed and tested for people with Down syndrome who may develop Alzheimer’s disease, to track changes quietly in daily life.
-
Immune and NGF factors in Alzheimer’s for adults with Down syndrome
This grant studies why people with Down syndrome develop Alzheimer’s disease by looking at immune signals and nerve growth factor problems.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.