Georgia Cystic Fibrosis Data Hub
The Georgia Cystic Fibrosis Data Warehouse
This project builds a secure collection of medical records and patient samples to help researchers and clinicians learn more about cystic fibrosis for people treated in Georgia.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Emory University NIH-funded |
| Lab location | 1 site (Atlanta, United States) |
| Project ID | NIH-11290718 on NIH RePORTER |
What this research studies
From my point of view as a patient or caregiver, this project links clinical information and stored blood, sputum, and other samples from people with CF into one secure database. The team will combine long-term health records with the Emory CF biospecimen bank and keep data de-identified and shared with approved researchers. The goal is to follow people over time to track outcomes, complications like CF-related diabetes, and how newer CFTR modulator drugs affect health as people live longer. The hub will support researchers who want to study patient-derived samples and real-world clinical experiences to speed better care.
Who could benefit from this research
Good fit: Ideal candidates are people with cystic fibrosis who receive care at Emory-affiliated or participating centers in Georgia and who agree to share their medical records and donated samples for research.
Not a fit: People who live outside the region, cannot share medical records or samples, or do not want their data used for research may not gain direct benefit from participating.
Why it matters
Potential benefit: If successful, this resource could speed discoveries that improve long-term care, treatment decisions, and quality of life for people with cystic fibrosis.
How similar studies have performed: Existing CF registries and biobanks have already helped drive important discoveries and therapies, so this builds on proven, successful approaches.
Where this research is happening
Atlanta, United States
- Emory University — Atlanta, United States (Active)
Researchers
- Principal investigator: Stecenko, Arlene a — Emory University
- Study coordinator: Stecenko, Arlene a
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.