Helping teens and young adults with sickle cell disease make treatment choices
Official title: Empowering adolescents and young adults with sickle cell disease as partners in treatment decision making (EMPOWER-AYA)
Funded at Nemours Children's Hospital, Delaware · NIH-11179265 · Data updated 2026-11-12
This project helps people aged 15–25 with sickle cell disease use a new technology tool to understand medicines like hydroxyurea and take part in treatment decisions with their care team.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Nemours Children's Hospital, Delaware NIH-funded |
| Lab location | 1 site (Wilmington, United States) |
| Project start | August 1, 2014 |
| Project end | June 30, 2027 |
| Funding year | 2025 |
| Award (this year) | $143,567 |
| NIH project number | 5P20GM109021-10 |
| Project ID | NIH-11179265 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates are adolescents and young adults with sickle cell disease, roughly ages 15–25, who are facing decisions about starting or continuing medicines such as hydroxyurea or newer therapies.
✕Less likely to help
Children under about 15, older adults, or people not making medication decisions are unlikely to get direct benefit from this specific intervention.
What this research studies
Younger patients and their doctors will work with the research team to adapt a decision-support tool that was originally made for parents so it fits teens and young adults. The team will build a technology-enhanced shared decision-making tool (for example an app or web-based aid) and get input from adolescents, young adults, caregivers, and clinicians to make it easy to use. The tool will cover hydroxyurea and newer SCD medicines, address common questions about safety and effectiveness, and aim to make conversations with clinicians clearer. The researchers will pilot the tool with AYAs to refine it and support better knowledge, engagement, and medication adherence.
Why it matters
Potential benefit: If successful, the tool could help more young people choose and stick with effective sickle cell treatments, potentially reducing pain crises and complications.
How similar studies have gone: Shared decision-making tools have improved knowledge and treatment adherence in other conditions and with parents of children with SCD, but tailored interventions for adolescents and young adults with SCD are new.
Where this research is happening
-
Nemours Children's Hospital, Delaware
Wilmington, United States Active
Researchers
- Principal investigator: Hildenbrand, Aimee K — Nemours Children's Hospital, Delaware
- Study coordinator: Hildenbrand, Aimee K
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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.