Improving data resources for sickle cell disease management
CURE SICKLE CELL INITIATIVE DATA STRATEGY AND DATA RESOURCES PROGRAM
['FUNDING_OTHER'] · RESEARCH TRIANGLE INSTITUTE · NIH-9788591
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
| Phase | ['FUNDING_OTHER'] |
|---|---|
| Study type | Nih_funding |
| Sex | All |
| Sponsor | RESEARCH TRIANGLE INSTITUTE (nih funded) |
| Locations | 1 site (RESEARCH TRIANGLE PARK, UNITED STATES) |
| Trial ID | NIH-9788591 on ClinicalTrials.gov |
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.
Who could benefit from this research
Good fit: Ideal candidates for this research are individuals diagnosed with sickle cell disease, particularly those with Hb SS disease.
Not a fit: Patients with other types of hemoglobin disorders or those without a diagnosis of sickle cell disease may not benefit from this research.
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 performed: 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 PARK, UNITED STATES
- RESEARCH TRIANGLE INSTITUTE — RESEARCH TRIANGLE PARK, UNITED STATES (ACTIVE)
Researchers
- Principal investigator: KRONER, BARBARA L — RESEARCH TRIANGLE INSTITUTE
- Study coordinator: KRONER, BARBARA L
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 below.