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
firstname.lastname@example.org; Joy Bryant is
her nurse at 301-443-8690 and
>See NIH site for study
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
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.