Early ADPKD patient registry and biobank
Clinical Research Core
This project collects medical records, MRIs, blood and urine samples from children, young adults, and adults with ADPKD and their at-risk relatives to support research on early disease.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | University of Kansas Medical Center NIH-funded |
| Lab location | 1 site (Kansas City, United States) |
| Project ID | NIH-11232063 on NIH RePORTER |
What this research studies
If you join, the team will follow participants over time with yearly clinic visits and blood and urine collection, and abdominal MRIs every two years. They will add 8–10 new ADPKD participants per year at sites in Kansas City and Chicago and include unaffected or at-risk family members. Collected samples and clinical data are stored in a shared biobank and harmonized database so researchers can use them safely. The project also does genetic testing and uses AI to extract advanced imaging measures of kidney cysts.
Who could benefit from this research
Good fit: People of any age with confirmed or suspected ADPKD, including children, young adults, and at-risk family members, are the ideal candidates for participation.
Not a fit: People with kidney conditions unrelated to ADPKD or those unwilling to attend in-person visits, provide blood/urine, or undergo MRI are unlikely to benefit directly from this project.
Why it matters
Potential benefit: If successful, this resource could help identify early markers of ADPKD and speed development of better diagnostic tests and targeted treatments.
How similar studies have performed: This work builds on an existing Early PKD Observational Cohort (EPOC) and other PKD registries that have advanced knowledge, while the AI-based imaging measures are a newer approach.
Where this research is happening
Kansas City, United States
- University of Kansas Medical Center — Kansas City, United States (Active)
Researchers
- Principal investigator: Yu, Alan S — University of Kansas Medical Center
- Study coordinator: Yu, Alan S
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.