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Polycystic Kidney Disease Data Repository

Autosomal Dominant Polycystic Kidney Disease Data Repository

Who can join

Ages 18 and older · All sexes

Inclusion Criteria:

* Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.

Exclusion Criteria:

* Inability to provide informed consent.

About the study

Autosomal dominant polycystic kidney disease (PKD) is the most common inherited kidney disease, affecting more than 400,000 people in the U.S. and 5 million people worldwide. PKD is the 4th most common cause of kidney failure requiring dialysis and/or transplantation. Over half of all PKD patients develop kidney failure by age 60 years, although age of onset of kidney disease varies widely, even among members of the same family.

Despite the fact this is a relatively common problem, relatively few patients have been studied for a sufficient period of time to fully understand how patients are affected over the course of their lifetime. The reason for creating this repository is to collect information about PKD so that the investigators may fully understand its complications, including high blood pressure, heart attack, and stroke. This information may also aid in the development of improved treatment strategies.

Sponsor: The Rogosin Institute · Participants: 1,000 · Started: 2002-11

Contact the study team

• Jon Blumenfeld, MD · Phone: 212-746-1553

Official record on ClinicalTrials.gov — NCT00792155

Locations in the U.S.

From ClinicalTrials.gov, data retrieved Sep 30, 2026. Each study sets its own eligibility; the study team decides who can join.