REAL Answers: expanding a sickle cell registry
"REAL Answers" (Registry Expansion Analyses to Learn)
This project builds a larger sickle cell patient registry to collect health and treatment information to help people with sickle cell disease.
Quick facts
| Grant type | U01 cooperative agreement |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Icahn School of Medicine at Mount Sinai NIH-funded |
| Lab location | 1 site (New York, United States) |
| Project ID | NIH-11142499 on NIH RePORTER |
What this research studies
If you join, the project will expand a national sickle cell registry to collect detailed health and treatment information from children and adults. You would share medical records, lab results, and answers about symptoms and quality of life, and clinics will add data on medicines like hydroxyurea, L-glutamine, voxelotor, and crizanlizumab. Researchers will analyze real-world patterns to see which treatments or combinations help different types of sickle cell disease. The goal is to use these findings to guide your doctors and to shape future clinical trials that better match patients' needs.
Who could benefit from this research
Good fit: People with sickle cell disease of any age, especially U.S. patients and those of African ancestry, who can share their medical records and outcomes are ideal candidates.
Not a fit: People without sickle cell disease or those unable to share records or access participating clinics would not benefit directly from this registry.
Why it matters
Potential benefit: If successful, this could help doctors and patients choose more effective treatments and reduce complications from sickle cell disease.
How similar studies have performed: Earlier studies have shown benefits from drugs like hydroxyurea and newer FDA-approved therapies, but using a large real-world registry to compare treatments and combinations is a newer approach.
Where this research is happening
New York, United States
- Icahn School of Medicine at Mount Sinai — New York, United States (Active)
Researchers
- Principal investigator: Glassberg, Jeffrey Avins — Icahn School of Medicine at Mount Sinai
- Study coordinator: Glassberg, Jeffrey Avins
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.