PKDOC Database

The Polycystic Kidney Disease Outcomes Consortium database consists of de-identified data from three longitudinal observational patient registries. The data have been standardized and aggregated into a common format using a Clinical Data Interchange Standards Consortium (CDISC) Standard Data Tabulation Model (SDTM) structure. This enables analyses to be performed on a larger expanded dataset. The data cover approximately seven decades of patient visits from the following sources:

   –   University of Colorado – Denver
   –   Mayo Clinic
   –   Emory University

The common database contains data from a total of 2498 subjects with ages ranging from 0 to 84 years at study entry (mean 35.9; median 37). A majority (81%) of the subjects are Caucasian, and 59% are female. There were 252 deaths and 667 ESRD events recorded with varying levels of timing information (ranging from the precise event day to just the event year). Because the data are from patient registries and not clinical trials, the timing of the visits is irregular, and not all tests or measurements were done on a consistent basis. Nonetheless, this is a rich dataset of historical data of patients with Autosomal Dominant PKD.