A national Down syndrome data hub to share research and support families
The INCLUDE Data Coordinating Center
This project creates a central data and resource center to help researchers and families learn more about health issues in people with Down syndrome.
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 ID | NIH-11247714 on NIH RePORTER |
What this research studies
From your perspective, this project gathers and links health records, study results, and biological data from many Down syndrome studies into one secure hub. The DCC will clean and harmonize data, manage access, and support researchers with study design and analysis tools. It also runs outreach to families, clinics, and advocacy groups to encourage participation and share findings. By connecting studies and standardizing information, it aims to speed up discoveries about conditions like Alzheimer disease and other health issues common in people with Down syndrome.
Who could benefit from this research
Good fit: Ideal participants include people with Down syndrome of any age, their families or caregivers, and clinics or researchers willing to share deidentified health data or samples for research.
Not a fit: People who do not have Down syndrome and those unwilling or unable to share health information or samples are unlikely to see direct benefits from this project.
Why it matters
Potential benefit: If successful, this could speed discoveries that lead to better prevention, treatments, and clinical care for people with Down syndrome.
How similar studies have performed: Centralized data hubs and research consortiums have successfully accelerated discoveries in other diseases, and this center applies those proven approaches to Down syndrome research.
Where this research is happening
Philadelphia, United States
- 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
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 below.