Clinical Trial: Repository Study of Autosomal Dominant Polycystic Kidney Disease

Study Status: Withdrawn
Recruit Status: Withdrawn
Study Type: Observational [Patient Registry]

Official Title: Repository Study of Autosomal Dominant Polycystic Kidney Disease

Brief Summary: The design and establishment of the Polycystic Kidney Disease (PKD) Data Repository does not require, and may be constrained by, a narrowly conceived hypothesis. However, the PKD Repository has been designed to include demographic, clinical, biochemical, and genetic data that will further explore the natural history of the disorder and assess the factors that are likely to be associated with the progression of disease and the incidence of complications including renal failure, cardiovascular disease, and stroke.

Detailed Summary: The goal of this project is to collect data from a large population of patients with PKD. Based upon the estimated prevalence of PKD (1:500 and 1:1000 live births), it is estimated that there may be 10,000 PKD patients in the New York City area. This sample size far exceeds any database established thus far. As many as 40% of affected PKD patients are reportedly unaware of a family history of this disease, in part because many patients may go undiagnosed until they present with a medical complication (e.g., hypertension, kidney failure). Furthermore, this initiative will provide an opportunity to compare data from racially diverse populations.
Sponsor: The Rogosin Institute

Current Primary Outcome: Natural history of Autosomal Dominant Polycystic Kidney Disease (ADPKD) progression [ Time Frame: Up to 20 years ]

Original Primary Outcome: Same as current

Current Secondary Outcome:

Original Secondary Outcome:

Information By: The Rogosin Institute

Dates:
Date Received: November 7, 2013
Date Started: November 2013
Date Completion:
Last Updated: March 27, 2017
Last Verified: March 2017