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Autosomal Dominant Polycystic Kidney Disease (ADPKD) Study

Who can join

Up to age 18 · All sexes

Inclusion Criteria:

* Demonstration of ADPKD by clinical information, imaging studies, biopsy, autopsy, or genetic testing.

Exclusion Criteria:

* Patients with Autosomal Recessive Polycystic Kidney disease (ARPKD), urinary tract malformations or major congenital anomalies of other systems suggesting a diagnosis other than recessive hepato-renal fibrocystic diseases.

About the study

Autosomal Dominant Polycystic Kidney Disease (ADPKD) is the most common genetic cause of renal failure. For several decades, ADPKD was regarded as an adult-onset disease. In the last decade, it has become more widely appreciated that the disease course begins in childhood. However, evidence-based guidelines on how to manage and approach children diagnosed with or at-risk for of ADPKD are lacking. Overall, there is insufficient data on the clinical course during childhood. The study intends to get more information on Autosomal Dominant Polycystic Kidney Disease (ADPKD) and other hepato/renal fibrocystic diseases. Additionally, the study intends to expand web-based resources so anyone can learn about ADPKD or other hepato/renal fibrocystic diseases. Individuals diagnosed with the dominant form of a hepato/renal fibrocystic condition are invited to be in the study.

Sponsor: Children's Hospital of Philadelphia · Participants: 300 · Started: Oct 10, 2019

Contact the study team

• Jasmine Jaber, MS · Phone: 267-425-5325

Official record on ClinicalTrials.gov — NCT04338048

Locations in the U.S.

Conditions

• Autosomal Dominant Polycystic Kidney

From ClinicalTrials.gov, data retrieved Oct 2, 2026. Each study sets its own eligibility; the study team decides who can join.