CHOP is partnering with Children's National Medical Center (CNMC) to create a research database of data and blood samples of people who have autosomal polycystic kidney disease (ARPKD) or another hepato/renal fibrocystic disease (HRFD). The purpose is to try to learn more about the causes of these diseases. If you are interested in participating, we will collect data from your medical record to contribute to the database at CNMC. You may also provide an optional blood sample. You may visit arpkdb.org and download the FAQs for you and your child’s doctor or call the CHOP Research Coordinator, Mohini Dutt, at 267-425-3933.
Division of Nephrology Clinical Studies
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In this study, we are developing new ultrasound and magnetic resonance imaging (MRI) methods to measure kidney and liver disease severity in autosomal recessive polycystic kidney disease (ARPKD). Participants in this study will include individuals with ARPKD, and a comparison group of healthy individuals without liver or kidney disease. Individuals of any age may take part in the study.
The primary goal of this research study is to see if new types of magnetic resonance imaging (MRI) can be used to measure liver health in children with autosomal recessive polycystic kidney disease (ARPKD) compared to healthy controls. Both children with ARPKD and healthy children, aged 6 years and above can participate.
- The risk of developing nephrotic syndrome
- The response to treatment of nephrotic syndrome and
- The risk of recurrence of nephrotic syndrome following kidney transplantation.
- Clinical diagnosis of nephrotic syndrome
- Biopsy proven diagnosis of FSGS or MCD and,
- History of living or deceased donor kidney transplantation