Improving decision-making support for individuals with Down syndrome through e-education
Leveraging E-education to Advance Assent and Decision-Making Involvement in Down Syndrome Administrative Supplement
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 ID | NIH-10986605 on NIH RePORTER |
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.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals with Down syndrome, particularly those aged 21 and under, who may benefit from enhanced decision-making support.
Not a fit: 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.
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 performed: 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
Philadelphia, United States
- 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
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 below.