New York, New York 10021


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.

Study summary:

Visit #1: - An initial detailed history, physical examination, and laboratory evaluation The following imaging procedures will be performed within three months of the first study visit: - Renal and hepatic magnetic resonance imaging Additional assessment and testing: - Genetic assessment: An extensive family history of PKD will be obtained from the patient. - Genotyping of specific PKD1 and PKD2 mutations Follow-up Study Visits: - Patients will return to the outpatient facility for detailed follow-up examinations every other year after Visit 1.


Inclusion Criteria: - Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate. Exclusion Criteria: - Inability to provide informed consent.



Primary Contact:

Principal Investigator
Jon Blumenfeld, MD
The Rogosin Institute

Ines Chicos, MS, CCRC
Phone: 212-746-3541

Backup Contact:


Location Contact:

New York, New York 10021
United States

Ines Chicos, MS, CCRC
Phone: 212-746-3541

Site Status: Recruiting

Data Source:

Date Processed: October 09, 2019

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