Improving decision-making support for individuals with Down syndrome
Official title: Leveraging E-education to Advance Assent and Decision-Making Involvement in Down Syndrome
Funded at Children's Hosp of Philadelphia · NIH-10901945 · Data updated 2026-11-12
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.
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) | $222,500 |
| NIH project number | 5R21HD112758-02 |
| Project ID | NIH-10901945 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research include individuals with Down syndrome and their families, particularly those who are navigating the consent and assent processes in research settings.
✕Less likely to help
Patients who do not have Down syndrome or those who are not involved in research participation 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 regarding their participation in research. By utilizing educational materials and multimedia platforms, the project seeks to create accessible information that respects the autonomy of these individuals and their families. The study will collaborate with families, translators, and design experts to ensure that the materials are comprehensible and effective. The goal is to empower individuals with Down syndrome to better understand and engage in research decisions that affect them.
Why it matters
Potential benefit: If successful, this research could lead to improved decision-making support for individuals with Down syndrome, enhancing their autonomy and participation in research.
How similar studies have gone: While there is limited data on this specific approach, similar efforts to enhance decision-making involvement for individuals with intellectual disabilities have shown promise in improving engagement and understanding.
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
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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.