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Polycystic Kidney Disease Data Repository

Autosomal Dominant Polycystic Kidney Disease Data Repository

Status
Recruiting
Phases
Unknown
Study type
Observational
Source
ClinicalTrials.gov
Registry ID
NCT00792155
Enrollment
1000
Registered
2008-11-17
Start date
2002-11-30
Completion date
2030-12-31
Last updated
2025-11-12

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Polycystic Kidney Disease

Keywords

PKD

Brief summary

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.

Detailed description

Visit #1: * An initial detailed history, physical examination, and laboratory evaluation * An extensive family history of PKD will be obtained from the patient. Follow-up Study Visits: \- Patients will return to the outpatient facility for detailed follow-up examinations every other year after Visit 1.

Interventions

None listed

Sponsors

Weill Medical College of Cornell University
CollaboratorOTHER
New York Presbyterian Hospital
CollaboratorOTHER
The Rogosin Institute
Lead SponsorOTHER

Study design

Observational model
COHORT
Time perspective
PROSPECTIVE

Eligibility

Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No

Inclusion criteria

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

Exclusion criteria

* Inability to provide informed consent.

Design outcomes

Primary

MeasureTime frameDescription
Polycystic kidney disdease data repository30 yearsPolycystic kidney disease data repository

Countries

United States

Contacts

Primary ContactJon Blumenfeld, MD
jdblume@nyp.org212-746-1553

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 13, 2026