INCLUDE Data Coordinating Center for Down syndrome research
Official title: The INCLUDE Data Coordinating Center
Funded at Children's Hosp of Philadelphia · NIH-11567215 · Data updated 2026-11-12
A national coordinating center is funded to organize and share data from studies about Down syndrome and related conditions to help people with DS and their families.
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-11567215 on NIH RePORTER |
Who could benefit from this research
✓Could help
People with Down syndrome and their families who participate in related studies or rely on DS health information may indirectly benefit from improved data resources.
✕Less likely to help
The grant itself does not enroll patients; it funds data coordination and infrastructure that support DS research rather than a direct patient intervention.
What this research studies
This grant supports the INCLUDE Data Coordinating Center, which will manage data, communication, and collaboration across DS research projects. It aims to improve data accessibility and interoperability so researchers, clinicians, and families can learn from findings related to Down syndrome and associated health risks. The center includes administrative outreach, data management, and a data hub to connect investigators, communities, and global resources. The work is designed to accelerate discoveries that could improve quality of life and health outcomes for people with DS across the lifespan.
Why it matters
Potential benefit: If successful, this center could speed up sharing of DS research findings and enable more effective clinical care and future trials for people with Down syndrome.
How similar studies have gone: Data coordinating centers have proven essential for large-scale, multi-site studies, enabling better data quality and collaboration, though this specific DS-focused center is part of an ongoing national effort.
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.