A registry for individuals with Down syndrome to connect and share health information.
Official title: Down Syndrome Connect Registry
Funded at University of Colorado Denver · NIH-11341274 · Data updated 2026-11-12
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 start | June 15, 2024 |
| Project end | June 14, 2026 |
| Funding year | 2025 |
| Award (this year) | $999,558 |
| NIH project number | 3OT2HD117033-01S1 |
| Project ID | NIH-11341274 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include individuals with Down syndrome and their families.
✕Less likely to help
Patients without Down syndrome or those not connected to the Down syndrome community may not benefit from this research.
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.
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 gone: Similar registries and collaborative approaches have shown success in enhancing research and patient care in other genetic conditions.
Where this research is happening
-
University of Colorado Denver
Aurora, United States Active
Researchers
- Principal investigator: Espinosa, Joaquin M. — University of Colorado Denver
- Study coordinator: Espinosa, Joaquin M.
Related research
Other NIH-funded projects on the same topics.
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Exploring how Down syndrome affects optic nerve health in kids
A study using a mouse model to understand why optic nerve problems are common in children with Down syndrome and how to prevent them.
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Executive Function Enhancement for Young Children with Down Syndrome
A caregiver-guided program for kids with Down syndrome aged up to 11 to strengthen their thinking skills during early childhood.
-
Silencing an Extra Chromosome to Help Down Syndrome and Related Conditions
A patient-friendly plan to use a gene-based approach to quiet an extra chromosome in cells and a mouse model to reduce disease-related effects in Down syndrome and other chromosomal imbalance disorders.
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Infant Down Syndrome Brain and Behavior Study
A study of infants with Down syndrome to collect brain imaging and developmental data, creating a large, shared resource to understand how autism and other factors relate to development.
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DS-ARC: Smartphone-based cognitive check for people with Down syndrome at risk for Alzheimer’s
A smartphone-based cognitive test is being developed and tested for people with Down syndrome who may develop Alzheimer’s disease, to track changes quietly in daily life.
-
Immune and NGF factors in Alzheimer’s for adults with Down syndrome
This grant studies why people with Down syndrome develop Alzheimer’s disease by looking at immune signals and nerve growth factor problems.
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.