Data Management Core for Down syndrome research data coordination
Official title: Administrative and Outreach Core
Funded at Children's Hosp of Philadelphia · NIH-11525081 · Data updated 2026-11-12
A data management core helps researchers studying Down syndrome share, organize, and use data in a secure, open way to advance discoveries.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hosp of Philadelphia NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project start | September 26, 2020 |
| Project end | August 31, 2030 |
| Funding year | 2026 |
| Award (this year) | $565,035 |
| NIH project number | 5U2CHL156291-07 |
| Project ID | NIH-11525081 on NIH RePORTER |
Who could benefit from this research
✓Could help
Researchers and clinicians working with Down syndrome data who need robust data management and sharing platforms.
✕Less likely to help
Direct patient participation is not described; benefits accrue to the research community and future patients through improved data resources.
What this research studies
This grant funds the Data Management Core to improve how data about Down syndrome and related conditions are collected, stored, and shared. It focuses on open-source tools, FAIR data principles, and user-friendly dashboards to support researchers across projects. The team will collaborate with the Down syndrome community to refine metadata, phenotypic annotations, and secondary analyses, while modernizing infrastructure to handle large, diverse data types including imaging and health records. The goal is to make data more findable, accessible, interoperable, and reusable for future studies and improvements in care.
Why it matters
Potential benefit: If successful, patients could benefit from faster insights and more coordinated research efforts leading to better understanding and management of Down syndrome and its co-occurring conditions.
How similar studies have gone: Previous work has laid groundwork for data sharing in Down syndrome research, with ongoing improvements anticipated to enhance usability and collaboration.
Where this research is happening
-
Children's Hosp of Philadelphia
Philadelphia, United States Active
Researchers
- Principal investigator: Espinosa, Joaquin M. — Children's Hosp of Philadelphia
- Study coordinator: Espinosa, Joaquin M.
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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.