Polycystic Kidney Disease Data Repository

Polycystic Kidney Disease Clinical Trial

Official title: Autosomal Dominant Polycystic Kidney Disease Data Repository

Status Recruiting

Clinical Trial 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.

Clinical Trial Description

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. ;

Related Conditions & MeSH terms

• Kidney Diseases
• Polycystic Kidney Disease
• Polycystic Kidney Diseases

• NCT number: NCT00792155
• Study type: Observational
• Source: The Rogosin Institute
• Contact: Jon Blumenfeld, MD
• Phone: 212-746-1495
• Email: jdblume@nyp.org
• Status: Recruiting
• Start date: November 2002
• Completion date: December 2026