Data Hub Core for Down syndrome research
Official title: Data Hub Core
Funded at Children's Hosp of Philadelphia · NIH-11567224 · Data updated 2026-11-12
A data hub project is building a big, interoperable platform to securely share and analyze information from people with Down syndrome and related conditions.
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, 2027 |
| Funding year | 2026 |
| Award (this year) | $142,400 |
| NIH project number | 3U2CHL156291-06S1 |
| Project ID | NIH-11567224 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are individuals with Down syndrome or their family members who may contribute data or participate in future inclusive trials and research programs.
✕Less likely to help
Patients not directly involved in data sharing or with conditions not covered by included cohorts may see limited immediate benefit.
What this research studies
This grant funds a public-facing data hub that collects and links genetic, phenotypic, imaging, clinical, and -omics data to support Down syndrome research. It aims to make diverse datasets easy to search and analyze for researchers, clinicians, advocates, and families, using scalable cloud tools and user-friendly cohort-building capabilities. The work builds on prior successes with thousands of participants and expands to support broader collaboration, data sharing, and inclusive clinical studies focused on co-occurring conditions. By connecting data across cohorts and portals, it enables faster discovery and translation of findings into care for people with Down syndrome.
Why it matters
Potential benefit: If successful, researchers and clinicians could access integrated data to better understand Down syndrome and related conditions, accelerating new insights and therapies for patients and families.
How similar studies have gone: Previous data-sharing initiatives have demonstrated that integrated datasets enable more powerful analyses and faster discoveries.
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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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.