Collects long-term information on people with polycystic kidney disease
Gathers data on inherited polycystic kidney disease to understand its complications over time.
Plain-language title generated from the registry record
Registry title: Polycystic Kidney Disease Data Repository
Key facts
- Where
- New York, United StatesSee the site
Where in United States
- The Rogosin InstituteNew York, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- The Rogosin Institute
- Trial code
- NCT00792155
- Record updated
- 12 November 2025
- Original description
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.Read full original descriptionShow less
Autosomal Dominant Polycystic Kidney Disease Data Repository
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.
Inclusion: Any person, age 18 or older, with previously diagnosed ADPKD is eligible to participate.
Exclusion: Inability to provide informed consent.