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

This is a retrospective analysis to include demographic, clinical, biochemical, and genetic data that will further explore the natural history of ADPKD. It will also assess the factors that are likely to be associated with the progression of disease and the incidence of complications, including progressive chronic kidney disease, cardiovascular disease, and cerebrovascular disease.

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.

Study Population
All patients enrolled in this study will have the diagnosis of ADPKD

Inclusion Criteria:

  • Subjects should have a confirmed ADPKD diagnosis

Exclusion Criteria:

  • Unable to provide informed consent for PKD Genotyping

Contact information:

Ines Chicos, CCRC
212.746.3541
inc9012@nyp.org