Clinical Research Specific to ARPKD/CHF

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

This research is funded by The National Human Genome Research Institute and The National Institutes of Health.  This study was generated by the ARPKD/CHF Alliance, is the largest research study to date for ARPKD/CHF, and focuses not only on the kidneys, but the liver and all disease manifestations and ages.

Primary Investigator is Dr. Gunay-Aygun at 301 594 4181 and mgaygun@mail.nih.gov; Joy Bryant is her nurse at 301-443-8690 and bryantjo@mail.nih.gov. 

>Research Update

>See NIH site for study

>Testimonials

>The Children's Inn at NIH

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.

>More information

>Brochure

The ARPKD Database
The University of Alabama at Birmingham RPKDCC is an interdisciplinary center of excellence in PKD-related research, with specific emphasis on recessive PKD.

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