Digital pathway to support pediatric Down syndrome health care goals
Official title: Co-Designing a Digital Pathway to Implement Pediatric Down Syndrome Health Supervision Guidelines
Funded at Lurie Children's Hospital of Chicago · NIH-11372501 · Data updated 2026-11-12
A patient-focused plan to help doctors follow Down syndrome care guidelines for children and make care easier for families.
Quick facts
| Grant type | R21 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Lurie Children's Hospital of Chicago NIH-funded |
| Lab location | 1 site (Chicago, United States) |
| Project start | August 21, 2026 |
| Project end | July 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $448,860 |
| NIH project number | 1R21HD118352-01A1 |
| Project ID | NIH-11372501 on NIH RePORTER |
Who could benefit from this research
✓Could help
Children aged 0-11 with Down syndrome and their families who are engaged with primary care or developmental services.
✕Less likely to help
Children not yet identified for DS guidelines or those not accessing participating clinics may not benefit directly.
What this research studies
This project involves creating a user-friendly digital pathway that helps clinicians apply pediatric Down syndrome care guidelines in routine practice. It brings together teens with Down syndrome, their families, doctors, and clinic leaders to design and test a care process that can work in different clinic types and with various electronic health record systems. The work uses a Learning Health System approach to continuously collect information to improve care and support future research. The 2-year effort will identify what helps or hinders guideline use and build a scalable solution for real-world settings.
Why it matters
Potential benefit: If successful, the digital pathway could improve adherence to Down syndrome health guidelines and enhance timely screening, treatment, and family-centered care for children with DS.
How similar studies have gone: Prior efforts show that co-designed digital tools can improve guideline adherence in primary care, though this exact pathway is novel for pediatric Down syndrome.
Where this research is happening
-
Lurie Children's Hospital of Chicago
Chicago, United States Active
Researchers
- Principal investigator: Foster, Carolyn C. — Lurie Children's Hospital of Chicago
- Study coordinator: Foster, Carolyn C.
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.