Down Syndrome and Alzheimer’s: Understanding Health Trajectories and Care Using Medicaid Data
Official title: Down Syndrome Toward Optimal Trajectories and Health using Medicaid Analytic eXtract (DS-TO-THE-MAX)
Funded at Boston University Medical Campus · NIH-11449539 · Data updated 2026-11-12
This project uses large health data to understand how Alzheimer’s dementia develops and affects adults with Down syndrome, with the goal of guiding better care and planning.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Boston University Medical Campus NIH-funded |
| Lab location | 1 site (Boston, United States) |
| Project start | September 30, 2021 |
| Project end | August 31, 2031 |
| Funding year | 2026 |
| Award (this year) | $816,950 |
| NIH project number | 2R01AG073179-03A1 |
| Project ID | NIH-11449539 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adults with Down syndrome who have or are at risk for Alzheimer’s dementia and are enrolled in Medicare/Medicaid data programs (as part of the DS-TO-THE-MAX cohort).
✕Less likely to help
Individuals without Down syndrome or those not affected by Alzheimer’s dementia would not be directly benefiting from this study.
What this research studies
People with Down syndrome face a high risk of early Alzheimer’s dementia, and this project uses a national Medicaid/Medicare data cohort to track health trajectories, costs, and service use as the condition progresses. The team will extend the dataset through 2028 to examine prodromal signs, cerebrovascular events, and late-onset seizures, aiming to identify predictors of different care pathways. They will also quantify how often DS-AD leads to skilled nursing or high medical costs and explore what is known by people with Down syndrome about DS-AD to inform education needs. The ultimate goal is to improve clinical care planning, resource use, and support for patients and families affected by DS-AD.
Why it matters
Potential benefit: Better understanding of DS-AD progression and health service needs could lead to more timely care, improved planning, and cost-effective support for individuals with Down syndrome and their families.
How similar studies have gone: Previous work in the DS-TO-THE-MAX program has produced important insights into DS-AD timing and mortality using large administrative data.
Where this research is happening
-
Boston University Medical Campus
Boston, United States Active
Researchers
- Principal investigator: Rubenstein, Eric S — Boston University Medical Campus
- Study coordinator: Rubenstein, Eric S
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.
-
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.
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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.