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, and it’s a great way for participants to access helpful resources and get involved in making a difference for their community.
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-11040715 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 that directly impacts their lives. The registry also facilitates collaboration among researchers, healthcare providers, and advocacy organizations to ensure that scientific efforts are aligned with community needs.
Who could benefit from this research
Good fit: Ideal candidates for participation include individuals with Down syndrome and their families who are willing to share their health information.
Not a fit: Patients without Down syndrome or those who do not have family members with Down syndrome may not receive any benefit from this research.
Why it matters
Potential benefit: If successful, this research could lead to improved health outcomes and tailored interventions for individuals with Down syndrome.
How similar studies have performed: Previous registries and collaborative efforts in similar populations have shown success in enhancing research and improving patient care.
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.