Comprehensive handbook for developing a bladder cancer cystectomy database

Abstract

Objective: In an effort to standardize data collection for research regarding bladder cancer, the Bladder Cancer Working Group sought to provide a handbook that can be used as a guide for prospective or retrospective data collection.

Methods: Expert opinions for various data groups were compiled through a team of researchers at the BCAN. Peer review of each data group was performed from within the group.

Results: Essential and comprehensive data elements are provided for 9 groups of data elements, including demographics, comorbidities, staging, laboratory data, operative details, pathology, complications, outcomes, and quality of life measurements.

Conclusions: Establishment of a comprehensive bladder cancer database is important in initiating multicenter collaborations. While not every data point is critical, this review may be useful in serving as a reference in initiating projects and providing a framework for collaborations.

Keywords: Bladder cancer; Databases.