Clinical Care of Autosomal Polycystic Kidney Disease: Retrospective Analysis and Prospective PKD Genotyping (ADPKD)

New York

Overview

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 in every 500-1000 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.

 

Inclusion Criteria:

  • A confirmed ADPKD diagnosis

Exclusion Criteria:

  • Unable to provide informed consent for PKD Genotyping

 

For more information, contact:

Ines Chicos, CCRC
212.746.3541
inc9012@nyp.org