Include Data Coordinating Center for Down syndrome research
Official title: The INCLUDE Data Coordinating Center
Funded at Children's Hosp of Philadelphia · NIH-11525080 · Data updated 2026-11-12
A national program is funding a Data Coordinating Center to organize and share information about co-occurring conditions in people with Down syndrome to accelerate discoveries and improve lives.
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) | $5,971,520 |
| NIH project number | 5U2CHL156291-07 |
| Project ID | NIH-11525080 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome and their caregivers, as part of related research efforts, may indirectly benefit from improved data resources and future discoveries.
✕Less likely to help
This center itself does not test a specific treatment for patients but strengthens research infrastructure.
What this research studies
If you or your loved one has Down syndrome, this effort helps researchers connect data from many studies so they can better understand health issues that commonly occur with the condition, including risk for Alzheimer’s disease and autoimmune problems. The Center will manage administration, data handling, and a shared data hub to support collaboration across researchers and sites. This means future studies could translate findings more quickly into improved care and resources for people with Down syndrome across the lifespan. Participation may involve contributing to data collection efforts through affiliated studies and benefiting from faster, more coordinated scientific progress.
Why it matters
Potential benefit: Better insights and faster improvements in health care and services for people with Down syndrome and related conditions.
How similar studies have gone: Past large data-sharing initiatives have accelerated discoveries by enabling cross-study analyses and collaboration.
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.