Understanding health outcomes in children with Down syndrome in Texas
Official title: Down Syndrome Early Childhood Omics, Deep Phenotyping, and Epidemiology in Texas: DECODE IT Cohort
Funded at Baylor College of Medicine · NIH-10999683 · Data updated 2026-11-12
This study is looking at the health of children with Down syndrome to learn more about their unique challenges, like birth defects and other health issues, and aims to include a diverse group of kids to help improve care and support for everyone.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Baylor College of Medicine NIH-funded |
| Lab location | 1 site (Houston, United States) |
| Project start | September 17, 2024 |
| Project end | May 31, 2029 |
| Funding year | 2024 |
| Award (this year) | $2,644,869 |
| NIH project number | 1U01HD116485-01 |
| Project ID | NIH-10999683 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are children diagnosed with Down syndrome, particularly those from diverse backgrounds.
✕Less likely to help
Patients without a diagnosis of Down syndrome or those outside the age range of 0-11 years may not benefit from this research.
What this research studies
This research focuses on children with Down syndrome (DS) to better understand their health outcomes, including structural birth defects, increased risk of acute leukemia, and neurodevelopmental disorders. By utilizing the Texas Birth Defects Registry, the study aims to gather comprehensive data on the variability of these health issues among children with DS. The approach includes deep phenotyping and omics analysis to identify biological markers and improve health supervision guidelines. The goal is to include underrepresented minorities in this research to ensure diverse representation and better health outcomes.
Why it matters
Potential benefit: If successful, this research could lead to improved health supervision and intervention strategies for children with Down syndrome.
How similar studies have gone: Previous research has shown success in utilizing population-based registries to improve health outcomes for children with genetic conditions, making this approach promising.
Where this research is happening
-
Baylor College of Medicine
Houston, United States Active
Researchers
- Principal investigator: Lupo, Philip — Baylor College of Medicine
- 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.
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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.
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.