Helping young people with sickle cell disease manage their health better
Official title: Self-Management for Youth Living with Sickle Cell Disease (SMYLS)
Funded at Medical University of South Carolina · NIH-11009032 · Data updated 2026-11-12
This study is all about helping teens and young adults with sickle cell disease learn to take better care of themselves as they grow up, using a mobile app that provides helpful tools and resources during their transition to adult healthcare.
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 | 2025 |
| Award (this year) | $504,429 |
| NIH project number | 5R01NR020606-03 |
| Project ID | NIH-11009032 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are adolescents and young adults aged 12 to 25 who are living with sickle cell disease.
✕Less likely to help
Patients who are not diagnosed with sickle cell disease or are outside the age range of 12 to 25 may not benefit from this research.
What this research studies
This research focuses on improving self-management skills for adolescents and young adults living with sickle cell disease (SCD). It aims to develop a comprehensive model that includes tools and resources to help these individuals manage their condition effectively, especially during the transition from pediatric to adult care. The study will test a mobile health intervention designed to enhance self-management behaviors and assess how patient engagement influences these behaviors. By addressing the challenges faced by young patients, the research seeks to reduce negative health outcomes associated with SCD.
Why it matters
Potential benefit: If successful, this research could empower young patients with sickle cell disease to better manage their health, leading to improved health outcomes and quality of life.
How similar studies have gone: Previous research has shown that mobile health interventions can be effective in improving self-management behaviors in chronic disease populations, suggesting a promising approach for this study.
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.
Related research
Other NIH-funded projects on the same topics.
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Self-care support for teens and young adults with sickle cell
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.
-
An app to help adults with sickle cell disease manage stress and pain
This study is testing a new mobile app called You Cope, We Support, which is designed to help adults with sickle cell disease manage their pain and stress without relying too much on opioids, and you'll either use the app or get regular support to see which works better for you over the next few months.
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Digital twins of the spleen to help design better therapies for sickle cell disease
A computer-driven replica of the spleen is being developed to speed up creating safer and more effective treatments for people with sickle cell disease.
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Accelerating hydroxyurea use for sickle cell disease in Nigeria
A pragmatic study in Nigeria aims to help doctors use hydroxyurea more consistently for people with sickle cell disease.
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Immune and nerve signals behind acupuncture relief for sickle cell pain
This NIH grant explores how acupuncture helps reduce pain and opioid use for people with sickle cell disease.
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Michigan Diabetes Project: A Peer-Led Self-Management Program for Adults with Type 2 Diabetes
A peer-led self-management program for adults with type 2 diabetes is being tested to see if it improves blood sugar control and daily diabetes care.
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.