Healthcare use and burden of sickle cell disease in Delaware
Official title: Epidemiologic burden of Sickle Cell Disease: Evaluating Healthcare Utilization of Persons with Sickle Cell Disease in Delaware
Funded at Nemours Children's Hospital, Delaware · NIH-11179268 · Data updated 2026-11-12
This project looks at health records for people with sickle cell disease in Delaware to understand how they use hospitals, emergency rooms, and outpatient care.
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) | $257,190 |
| NIH project number | 5P20GM109021-10 |
| Project ID | NIH-11179268 on NIH RePORTER |
Who could benefit from this research
✓Could help
People of any age with sickle cell disease who live in or receive care in Delaware and appear in state or hospital records—especially those with a lab-confirmed diagnosis or multiple SCD-coded visits—are the focus of this work.
✕Less likely to help
People who live outside Delaware or who receive care entirely outside the included data systems (and thus are not captured in the state databases) may not be included or see direct benefit.
What this research studies
If you have sickle cell disease and receive care in Delaware, this project will use statewide health records to track how people like you use hospitals, emergency departments, and outpatient services from 2013–2022. The team combines data from hospital discharge records, emergency departments, Medicaid, the all-payer claims database, newborn screening, vital records, and clinical records. People will be counted as confirmed cases only with a lab diagnosis, while probable cases will be those with three or more SCD-coded healthcare visits within five years. The project works with the Delaware Sickle Cell Disease Collection Program and aims to capture roughly 90% of patients in the state to highlight care patterns and needs.
Why it matters
Potential benefit: Results could help improve access to care, guide state planning, and identify gaps in emergency and outpatient services for people with sickle cell disease in Delaware.
How similar studies have gone: Other U.S. state surveillance and registry projects using linked health records have successfully revealed care patterns and informed programs, so this approach builds on established methods.
Where this research is happening
-
Nemours Children's Hospital, Delaware
Wilmington, United States Active
Researchers
- Principal investigator: Gwarzo, Ibrahim Haliru — Nemours Children's Hospital, Delaware
- Study coordinator: Gwarzo, Ibrahim Haliru
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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.