This study is being done to better understand how certain MRI techniques can be applied to measuring disease progression in ARPKD patients.
- Collection of clinical information (such as blood pressures and results of previous imaging)
- Blood and urine collection
- Ages 6-25
- Clinical diagnosis of ARPKD
- Able to lie in MRI scanner for up to 60 minutes
- No history of transplantation of any type
- Normal or mildly decreased kidney function (chronic kidney disease stage 1 or 2)
- Able to safely have an MRI (including no pacemakers, implants or history of difficulties with having an MRI)
There will be three study visits over the course of approximately two years. At each visit, participants will need to fast 6-8 hours the night before the study visits, have a blood draw, provide a urine sample and have an MRI. The MRI does not require any IV contrast and is safe for patients with kidney disease. Certain patients will be asked to do a second MRI the day after the first MRI (to check to see how reliable the MRI findings are on a day to day basis). Procedures will be done at Cleveland Clinic Children’s and Case Western Reserve University. Travel costs will be covered by the study.
This study is being funded by the National Institutes of Health (NIH).
For more information, please contact:
Ashlee Parsons/Dr. Katherine Dell