Sickle Cell Data and Resource Hub
Official title: CURE SICKLE CELL INITIATIVE DATA STRATEGY AND DATA RESOURCES PROGRAM
Funded at Research Triangle Institute · NIH-11417043 · Data updated 2026-11-12
Creating shared, secure data tools and databases to help people with sickle cell disease, their doctors, and researchers speed up better treatments.
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 | 2025 |
| Award (this year) | $2,083,077 |
| NIH project number | 3OT3HL147798-01S5 |
| Project ID | NIH-11417043 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal participants are people living with sickle cell disease (children and adults) who are willing to share medical records, genetic test results, or join a registry.
✕Less likely to help
People without sickle cell disease or those unwilling or unable to share their medical information or samples would not see direct benefit from participating.
What this research studies
This program builds a central, secure system of sickle cell data, common data elements, and databanks so clinical information and trial results can be shared and combined. It standardizes how patient records, genetic and lab results, and trial measurements are recorded and linked. The project creates tools and rules for responsible data sharing, privacy protections, and connections to current and future gene-therapy and clinical trials. By bringing together data from hospitals, labs, and past studies, it aims to make it easier to design trials and match patients with appropriate research opportunities.
Why it matters
Potential benefit: If successful, it could speed development of new therapies and make it easier for patients to find and join suitable sickle cell clinical trials.
How similar studies have gone: Similar data-sharing and registry programs in other rare diseases and earlier sickle cell efforts have helped match patients to trials and accelerate research.
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.