Down syndrome early childhood omics and deep phenotyping in Texas
Official title: Down Syndrome Early Childhood Omics, Deep Phenotyping, and Epidemiology in Texas: DECODE IT Cohort
Funded at Emory University · NIH-11550844 · Data updated 2026-11-12
A large study of children with Down syndrome in Texas aims to map their biology and health experiences to improve care and outcomes.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Emory University NIH-funded |
| Lab location | 1 site (Atlanta, United States) |
| Project start | September 17, 2024 |
| Project end | May 31, 2029 |
| Funding year | 2026 |
| Award (this year) | $2,011,187 |
| NIH project number | 4U01HD116485-03 |
| Project ID | NIH-11550844 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children with Down syndrome, particularly those in Texas, from birth through early childhood, and from diverse backgrounds.
✕Less likely to help
Children without Down syndrome or not participating in this Texas cohort would not directly benefit from this study.
What this research studies
This project centers on children with Down syndrome to understand how their biology and health histories shape outcomes from birth through early childhood. It will collect comprehensive data and biological information from a diverse Texas cohort, linking birth records, birth defects, and health events to deep phenotyping and omics data. By combining population-based surveillance with advanced analyses, the study seeks to identify factors that influence development, disease risk, and health supervision needs. The goal is to inform better guidelines and targeted interventions for children with Down syndrome, including underrepresented minority groups.
Why it matters
Potential benefit: If successful, the research could lead to earlier risk prediction and more precise health monitoring for children with Down syndrome.
How similar studies have gone: Previous cohorts have demonstrated that integrated phenotyping and linked registry data can reveal clinically meaningful patterns; this study builds on those approaches in a diverse, population-based setting.
Where this research is happening
-
Emory University
Atlanta, United States Active
Researchers
- Principal investigator: Lupo, Philip — Emory University
- Study coordinator: Lupo, Philip
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.