Partnering with adolescents and young adults with sickle cell disease in treatment decisions
Funded at Nemours Children's Hospital, Delaware · NIH-11427469 · Data updated 2026-11-12
This grant explores how to better involve teens and young adults with sickle cell disease in choosing their therapies to improve how well they stick with treatment.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Nemours Children's Hospital, Delaware NIH-funded |
| Lab location | 1 site (Wilmington, United States) |
| Project start | September 1, 2026 |
| Project end | June 30, 2031 |
| Funding year | 2026 |
| Award (this year) | $789,558 |
| NIH project number | 1R01NR022356-01 |
| Project ID | NIH-11427469 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adolescents and young adults with sickle cell disease and their caregivers who are navigating treatment decisions.
✕Less likely to help
Patients not involved in decision-making processes or those not considering disease-modifying therapies may see limited benefit.
What this research studies
Young people with sickle cell disease often struggle to choose and follow the best therapies. The project focuses on shared decision-making to improve knowledge, engagement, and satisfaction when selecting disease-modifying options. It will involve patients, families, and providers to identify barriers and test approaches that support informed choices and adherence. The aim is to increase the use of effective therapies like hydroxyurea and other treatments while reducing treatment-related challenges.
Why it matters
Potential benefit: If successful, patients and families could experience more informed, collaborative treatment decisions and better adherence, leading to fewer complications.
How similar studies have gone: Previous work suggests shared decision-making can improve engagement, but focused AD/AYA sickle cell care is evolving and more evidence is needed.
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.