Data Hub Core for Down Syndrome Research and Collaboration
Official title: Data Hub Core
Funded at Children's Hosp of Philadelphia · NIH-11525086 · Data updated 2026-11-12
A secure, interconnected data platform is being built to connect genetic, clinical, imaging, and other data from people with Down syndrome to help researchers, clinicians, and families accelerate discoveries and trials.
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) | $4,220,034 |
| NIH project number | 5U2CHL156291-07 |
| Project ID | NIH-11525086 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome and their families, researchers, clinicians, and data scientists who contribute data or use the platform for research and clinical trial planning.
✕Less likely to help
Plain data-platform work without patient data contributions or direct patient-facing interactions may not provide immediate clinical benefits for a given individual.
What this research studies
This grant funds a data hub that brings together diverse information about individuals with Down syndrome and related conditions. It aims to make data from genetics, health records, imaging, and other sources easily accessible to researchers, clinicians, and patient communities through a scalable, interoperable infrastructure. The goal is to support basic science, cohort development, and clinical trials by enabling seamless data sharing, secure analytics, and collaborative tools. By expanding existing datasets and introducing new portals and partners, the project seeks to accelerate understanding of co-occurring conditions and resilience in Down syndrome. The work centers on improving data quality, governance, and user-friendly access for researchers and families alike.
Why it matters
Potential benefit: If successful, patients with Down syndrome could benefit from faster, more coordinated research and trials that target co-occurring conditions and overall health across the lifespan.
How similar studies have gone: Previous data hub efforts in this area have demonstrated the value of integrated, accessible datasets for accelerating DS research and trial readiness.
Where this research is happening
-
Children's Hosp of Philadelphia
Philadelphia, United States Active
Researchers
- Principal investigator: Resnick, Adam Cain — Children's Hosp of Philadelphia
- Study coordinator: Resnick, Adam Cain
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Data Hub Core for Down syndrome research
A data hub project is building a big, interoperable platform to securely share and analyze information from people with Down syndrome and related conditions.
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.