Improving data resources for sickle cell disease management
Official title: CURE SICKLE CELL INITIATIVE DATA STRATEGY AND DATA RESOURCES PROGRAM
Funded at Research Triangle Institute · NIH-9788591 · Data updated 2026-11-12
This study is working to make it easier for people with sickle cell disease to share and access important health information, so they can have a better experience and help researchers find new ways to improve their care.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Research Triangle Institute NIH-funded |
| Lab location | 1 site (Research Triangle Park, United States) |
| Project start | September 28, 2018 |
| Project end | December 31, 2026 |
| Funding year | 2018 |
| Award (this year) | $3,042,473 |
| NIH project number | 1OT3HL147798-01 |
| Project ID | NIH-9788591 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals diagnosed with sickle cell disease, particularly those with Hb SS disease.
✕Less likely to help
Patients with other types of hemoglobin disorders or those without a diagnosis of sickle cell disease may not benefit from this research.
What this research studies
This initiative focuses on enhancing data management and sharing for sickle cell disease through the development of a comprehensive data strategy and resources program. It aims to create a patient registry and a federated data warehouse that will allow for better interoperability and access to critical health information. By collaborating across various disciplines, the program seeks to improve the overall experience for patients with sickle cell disease and facilitate innovative research in this area.
Why it matters
Potential benefit: If successful, this research could lead to improved management and treatment options for patients with sickle cell disease.
How similar studies have gone: Other research initiatives focused on data sharing and management in sickle cell disease have shown promise, indicating that this approach could be effective.
Where this research is happening
-
Research Triangle Institute
Research Triangle Park, United States Active
Researchers
- Principal investigator: Kroner, Barbara L — Research Triangle Institute
- Study coordinator: Kroner, Barbara L
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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.