A registry for individuals with Down syndrome to connect and share health information.
Down Syndrome Connect Registry
This study is all about gathering health information from people with Down syndrome and their families to help improve future research and treatments, while also giving participants access to helpful resources and opportunities to get involved in research that matters to them.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Colorado Denver NIH-funded |
| Lab location | 1 site (Aurora, UNITED STATES) |
| Project ID | NIH-11341274 on NIH RePORTER |
What this research studies
The Down syndrome (DS)-Connect® registry is designed to gather and share health information from individuals with Down syndrome and their families. By collecting data on demographics, health histories, and medications, this registry aims to create a comprehensive resource that can inform future research and clinical trials tailored to the needs of the Down syndrome community. Participants will have access to valuable information and resources, as well as opportunities to engage in research initiatives. The registry also facilitates collaboration between the NIH, advocacy organizations, and healthcare professionals to ensure that research aligns with community needs.
Who could benefit from this research
Good fit: Ideal candidates for this research include individuals with Down syndrome and their families.
Not a fit: Patients without Down syndrome or those not connected to the Down syndrome community may not benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved understanding and treatment options for individuals with Down syndrome.
How similar studies have performed: Similar registries and collaborative approaches have shown success in enhancing research and patient care in other genetic conditions.
Where this research is happening
Aurora, UNITED STATES
- University of Colorado Denver — Aurora, United States (Active)
Researchers
- Principal investigator: Espinosa, Joaquin M. — University of Colorado Denver
- Study coordinator: Espinosa, Joaquin M.
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.