Down Syndrome Connect Registry (DS-Connect) modernized and sustained
Official title: Down Syndrome Connect Registry
Funded at University of Colorado Denver · NIH-11544980 · Data updated 2026-11-12
A patient-facing registry project that collects health histories and experiences from individuals with Down syndrome and their families to guide research and better care.
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, 2027 |
| Funding year | 2026 |
| Award (this year) | $1,298,881 |
| NIH project number | 3OT2HD117033-01S2 |
| Project ID | NIH-11544980 on NIH RePORTER |
Who could benefit from this research
✓Could help
Individuals with Down syndrome and their families who participate by contributing health histories and self-reported information.
✕Less likely to help
People not interested in sharing health information or not connected to the DS community may see no direct benefit.
What this research studies
This project will update and sustain the DS-Connect registry so people with Down syndrome and their families can securely share health information, access helpful resources, and be connected to research opportunities. Researchers and clinicians will use the real-world data to identify trends, tailor clinical trials, and improve care across the lifespan. Participants may contribute self-reported information and potentially receive targeted health resources and updates about DS-related research.
Why it matters
Potential benefit: If successful, it could lead to more relevant research and better-informed care for people with Down syndrome and their families.
How similar studies have gone: Regist ries and patient portals have shown value in guiding research and improving care in rare conditions like Down syndrome.
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.
-
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.
-
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.
-
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.
-
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.