Self-care support for teens and young adults with sickle cell
Official title: Self-Management for Youth Living with Sickle Cell Disease (SMYLS)
Funded at Medical University of South Carolina · NIH-11285152 · Data updated 2026-11-12
A smartphone-based self-care program helps adolescents and young adults with sickle cell disease build everyday management skills as they move to adult care.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Medical University of South Carolina NIH-funded |
| Lab location | 1 site (Charleston, United States) |
| Project start | April 21, 2023 |
| Project end | January 31, 2028 |
| Funding year | 2026 |
| Award (this year) | $504,429 |
| NIH project number | 5R01NR020606-04 |
| Project ID | NIH-11285152 on NIH RePORTER |
Who could benefit from this research
✓Could help
Adolescents and young adults (about 14–21 years old) with diagnosed sickle cell disease, especially those preparing to move from pediatric to adult care.
✕Less likely to help
Infants and very young children, people already established in adult sickle cell care, or those without smartphone access or ability to use mobile apps may not benefit from this intervention.
What this research studies
You would use a smartphone app that gives education, reminders, and tools to help with medicines, symptom tracking, and planning care. The team will enroll adolescents and young adults with sickle cell, track how much you use the app, and compare self-management behaviors before and after using it. They will also measure your patient activation (confidence and readiness to manage health) to see how it relates to behavior changes and health service use. Results will inform a clinical care model and resources for patients and providers.
Why it matters
Potential benefit: If successful, this could improve daily self-care, reduce complications and emergency visits, and make the transition to adult care smoother.
How similar studies have gone: Similar mobile health self-management programs for chronic illnesses and small pilot studies in sickle cell have shown promise, but larger rigorous trials are still limited.
Where this research is happening
-
Medical University of South Carolina
Charleston, United States Active
Researchers
- Principal investigator: Phillips, Shannon M. — Medical University of South Carolina
- Study coordinator: Phillips, Shannon M.
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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.