Early childhood Down syndrome health and biology in Texas (DECODE IT)
Down Syndrome Early Childhood Omics, Deep Phenotyping, and Epidemiology in Texas: DECODE IT Cohort
This project will follow young children with Down syndrome in Texas to collect health information and biological samples to better understand differences in medical and developmental 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 ID | NIH-11381528 on NIH RePORTER |
What this research studies
If your child joins, the team will use the Texas Birth Defects Registry to identify children with Down syndrome and ask families to share medical history, developmental testing, and biological samples. The project combines detailed clinical exams, 'omics' lab tests (like genetics and other molecular measures), and epidemiologic data to map how health issues such as birth defects, blood disorders, and development evolve in early childhood. Researchers plan to include children from diverse and underrepresented communities to make findings more broadly useful. Participation may involve clinic visits, medical record review, and sample collection over time to build a long-term picture of child health.
Who could benefit from this research
Good fit: Infants and young children with Down syndrome, especially those identified through or living in Texas and whose families are willing to share medical records and samples, are the intended participants.
Not a fit: Adults with Down syndrome, children living outside Texas, or children whose families cannot participate in clinic visits or sample collection are unlikely to benefit directly from joining.
Why it matters
Potential benefit: Results could lead to better screening, earlier detection of complications, and more personalized care plans for children with Down syndrome.
How similar studies have performed: Previous Down syndrome cohorts have provided important insights, but this population-based, deep-omics and detailed-phenotype approach across a diverse Texas population is relatively new.
Where this research is happening
Atlanta, United States
- Emory University — Atlanta, United States (Active)
Researchers
- Principal investigator: Lupo, Philip — Emory University
- Study coordinator: Lupo, Philip
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 below.