Improving health and quality of life for youth and young adults with Down syndrome
Official title: Advancing the Lives & HeaLth of Youth and Young Adults with Down Syndrome (ALLY-DS)
Funded at Children's Hosp of Philadelphia · NIH-11001698 · Data updated 2026-11-12
This study is looking to improve the health and happiness of people with Down syndrome by exploring common health issues they might face, and it’s open to individuals from babies to young adults who want to help us learn more about their experiences.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hosp of Philadelphia NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project start | September 17, 2024 |
| Project end | May 31, 2029 |
| Funding year | 2024 |
| Award (this year) | $2,598,199 |
| NIH project number | 1U01HD116470-01 |
| Project ID | NIH-11001698 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include individuals with Down syndrome from infancy through young adulthood, along with their caregivers.
✕Less likely to help
Patients without Down syndrome or those who are outside the specified age range may not benefit from this research.
What this research studies
This research aims to enhance the health and well-being of individuals with Down syndrome by investigating various co-occurring health conditions such as endocrine disorders, sleep issues, and cognitive challenges. The project will involve collaboration with clinicians, researchers, and families to create a diverse group of participants ranging from infancy to young adulthood. Participants will undergo a series of assessments including blood tests, imaging studies, and interviews to gather comprehensive health data. The goal is to better understand the health challenges faced by individuals with Down syndrome and to develop effective interventions.
Why it matters
Potential benefit: If successful, this research could lead to improved healthcare strategies and interventions that significantly enhance the quality of life for individuals with Down syndrome.
How similar studies have gone: Previous research has shown success in addressing health disparities and improving outcomes for individuals with intellectual disabilities, making this approach both relevant and promising.
Where this research is happening
-
Children's Hosp of Philadelphia
Philadelphia, United States Active
Researchers
- Principal investigator: Kelly, Andrea Bridget — Children's Hosp of Philadelphia
- Study coordinator: Kelly, Andrea Bridget
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.
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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.