Georgia Cystic Fibrosis Data Hub
Official title: The Georgia Cystic Fibrosis Data Warehouse
Funded at Emory University · NIH-11290718 · Data updated 2026-11-12
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 start | March 1, 2024 |
| Project end | February 28, 2029 |
| Funding year | 2026 |
| Award (this year) | $777,277 |
| NIH project number | 5U24HL171672-03 |
| Project ID | NIH-11290718 on NIH RePORTER |
Who could benefit from this research
✓Could help
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.
✕Less likely to help
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.
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.
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 gone: 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
-
Emory University
Atlanta, United States Active
Researchers
- Principal investigator: Stecenko, Arlene a — Emory University
- Study coordinator: Stecenko, Arlene a
Related research
Other NIH-funded projects on the same topics.
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Blocking CFTR in the cervix to prevent conception without hormones
A non-hormonal approach aims to stop sperm from entering the uterus by making cervical mucus too thick for sperm, potentially offering a new contraception option.
-
Optimizing Treatments for People with Cystic Fibrosis on Highly Effective Modulator Therapy
A real-world study in people with cystic fibrosis on highly effective CFTR modulator therapy to understand how traditional CF treatments can be adjusted safely.
-
Elastin-like particles to deliver gene therapies for cystic fibrosis
A new nanoparticle system is being developed to deliver genetic therapies directly to the lungs of people with cystic fibrosis, including those with nonsense mutations.
-
Pharmacogenomic Predictors of Clinical Responses in Cystic Fibrosis using Targeted WGS
A study looking at how genetic information from whole-genome sequencing can predict how people with cystic fibrosis respond to medications, using a focused set of pharmacogenomic genes.
-
Ceftaroline-meropenem combo to beat MRSA in cystic fibrosis
A new combination antibiotic approach is being tested to help people with cystic fibrosis who have MRSA infections that resist standard treatments.
-
Gut microbiome in cystic fibrosis and colorectal cancer risk
Researchers are studying how the gut bacteria in adults with cystic fibrosis influence the development of colorectal cancer.
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.