Improving decision-making support for individuals with Down syndrome through e-education
Official title: Leveraging E-education to Advance Assent and Decision-Making Involvement in Down Syndrome Administrative Supplement
Funded at Children's Hosp of Philadelphia · NIH-10986605 · Data updated 2026-11-12
This study is all about helping people with Down syndrome and their families understand and take part in decisions about their care and research, using easy-to-understand online tools that share important information in a friendly way.
Quick facts
| Grant type | R21 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Children's Hosp of Philadelphia NIH-funded |
| Lab location | 1 site (Philadelphia, United States) |
| Project start | August 10, 2023 |
| Project end | July 31, 2025 |
| Funding year | 2024 |
| Award (this year) | $186,960 |
| NIH project number | 3R21HD112758-02S1 |
| Project ID | NIH-10986605 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals with Down syndrome, particularly those aged 21 and under, who may benefit from enhanced decision-making support.
✕Less likely to help
Patients without Down syndrome or those who are not involved in decision-making processes related to their care may not receive any benefit from this research.
What this research studies
This research aims to enhance the involvement of individuals with Down syndrome in the decision-making process related to their care and participation in research. By utilizing e-education tools, the project seeks to provide accessible information about study procedures, risks, and benefits in a way that is understandable for individuals with intellectual disabilities. The approach includes collaboration with institutions serving diverse populations to ensure that the educational materials are culturally relevant and effective. The goal is to empower these individuals and their families to make informed choices about their participation in research.
Why it matters
Potential benefit: If successful, this research could lead to improved decision-making capabilities and greater autonomy for individuals with Down syndrome in clinical and research settings.
How similar studies have gone: Previous research has shown that using multimedia and tailored educational approaches can effectively improve understanding and engagement in individuals with intellectual disabilities, suggesting a promising avenue for this project.
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.
-
Improving decision-making support for individuals with Down syndrome
This study is all about helping people with Down syndrome and their families feel more included and informed when it comes to making choices about participating in research, using easy-to-understand materials and fun multimedia tools.
-
Understanding how octopuses integrate sensory information and make decisions
This study is exploring how octopuses use their arms to grip things by looking closely at their nervous system and movements, which could help us understand their amazing abilities better.
-
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.
-
NoviGuide for Newborn Care in Pakistan
A small NIH grant to test a pocket-sized decision support tool for nurses and doctors to improve newborn care in Pakistan.
-
Understanding how aging and Alzheimer’s affect how people make tough choices
This NIH grant studies how aging and Alzheimer’s risk change how people decide between immediate and delayed rewards and risky options, with the goal of helping older adults stay financially and healthwise safer.
-
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.
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.