Infant Down Syndrome Brain and Behavior Study
Official title: The Infant Down Syndrome Brain and Behavior Study
Funded at Washington University · NIH-11595423 · Data updated 2026-11-12
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.
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) | $21,600 |
| NIH project number | 3U01HD116463-02S1 |
| Project ID | NIH-11595423 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are infants with Down syndrome enrolled for longitudinal neurodevelopmental studies and willing to undergo imaging, biospecimen collection, and phenotypic assessments.
✕Less likely to help
Infants who cannot participate in MRI imaging or biospecimen collection, or whose families choose not to participate, may not directly benefit.
What this research studies
This project will recruit DS infants across the lifespan and gather brain images, behavioral data, biospecimens, and other phenotypes. It builds on IBIS infrastructure to collect prospective neuroimaging and deep phenotyping in DS infants, with the goal of sharing a common data protocol for broad use. The effort aims to identify developmental subtypes and enhance statistical power by combining new DS infant data with existing IBIS data, enabling replication of neurodevelopmental findings across diverse outcomes. The work is organized across multiple collaborating sites, leveraging years of experience in infant recruitment and longitudinal assessment. The outcomes will advance understanding of how DS relates to neurodevelopment and autism risk, informing future research and potential interventions.
Why it matters
Potential benefit: If successful, this research could improve early detection and characterization of developmental trajectories in infants with Down syndrome, guiding more targeted support and interventions.
How similar studies have gone: Previous infant brain imaging studies have shown the value of deep phenotyping, and this project aims to extend that work to DS with a larger, shareable dataset.
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.
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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.
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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.
-
Executive Function Support for Young Children with Down Syndrome
A caregiver-led program helps young children with Down syndrome build executive function skills during a 12-week period.
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.