Polycystic Kidney Disease Data Repository

Recruiting now

Conditions studied: Polycystic Kidney Disease

In brief

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.

Key facts

Study ID

NCT00792155

Run by

The Rogosin Institute

People needed

1000

Starts

2002-11-01

Expected to finish

2030-12-01

Last updated by the study team

2025-11-12

Who can join

Age: 18 and older. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

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

You may not qualify if…

• Inability to provide informed consent.

Where it is running

• The Rogosin Institute — New York, New York, United States (enrolling)

Full record on ClinicalTrials.gov

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