Health and development of babies born with an extra sex chromosome (e.g., XYY, XXY, XXX)
The eXtraordinarY Babies Study: Natural History of Health and Neurodevelopment in Infants with Sex Chromosome Trisomy
This project follows babies with an extra sex chromosome from infancy into early childhood to watch their health, growth, and early development over time.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Colorado Denver NIH-funded |
| Lab location | 1 site (Aurora, UNITED STATES) |
| Project ID | NIH-11322605 on NIH RePORTER |
What this research studies
If your baby was diagnosed with an extra sex chromosome before or after birth, this project follows them with regular check-ins to track growth, medical issues, and developmental milestones. The team collects medical histories, hormone tests, developmental exams, behavior questionnaires, and stores biospecimens in a longitudinal biobank. Visits and standardized measures focus on speech, learning, attention, social development, and medical conditions like seizures or endocrine changes. The information is used to map common paths and spot early signs that could help families and clinicians provide timely support.
Who could benefit from this research
Good fit: Infants and young children diagnosed with a sex chromosome trisomy (for example XYY, XXY/Klinefelter, or XXX/Trisomy X), especially those identified prenatally or in the first years of life, are ideal candidates.
Not a fit: People without a sex chromosome trisomy, or those seeking an immediate therapeutic treatment rather than observational follow-up, are unlikely to gain direct clinical benefit from participation.
Why it matters
Potential benefit: Findings could lead to earlier recognition of learning, behavioral, and medical issues and help guide better genetic counseling and care for affected children.
How similar studies have performed: Smaller prior studies have reported increased risks for language, learning, ADHD, and autism in SCT, and this larger prospective cohort builds on that earlier work to provide more detailed natural-history data.
Where this research is happening
Aurora, UNITED STATES
- University of Colorado Denver — Aurora, United States (Active)
Researchers
- Principal investigator: Tartaglia, Nicole Renee — University of Colorado Denver
- Study coordinator: Tartaglia, Nicole Renee
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.