ARPKD/CHF Clinical Research

Clinical Investigations into Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis

Funded by The National Human Genome Research Institute and The National Institutes of Health, this study was generated by the ARPKD/CHF Alliance and is the largest, most comprehensive research study to date for ARPKD/CHF. It includes all manifestations and ages.

Research Investigator: Dr. Gunay-Aygun at 301 594 4181 or; and Joy Bryant, research nurse at 301-443-8690 or

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PKD Clinic at Children’s Hospital of Wisconsin

The Childhood PKD Clinic, a unique component of the Comprehensive Renal Program at the Children’s Hospital of Wisconsin, is a multidisciplinary clinic focused solely on children with suspected or diagnosed ARPKD or ADPKD. The clinic features Attending Nephrologists, Hepatologists, and Geneticists/Genetic counselors in addition to the specialized renal comprehensive care team of pediatric nurse specialists, dieticians, social workers, and behavioral health specialists.

It is the only clinic solely devoted to the multidisciplinary diagnosis and treatment of children with polycystic kidney disease. It is a unique resource being utilized by children from all over the world for comprehensive diagnostics, therapeutic care plans and consideration for preimplantation genetic diagnosis. This clinic works closely with the Children’s Kidney Disease Research Program at Children’s Hospital of Wisconsin.

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