The example of CaPSURE: Lessons learned from a national disease registry

Sima P. Porten, Matthew R. Cooperberg, Badrinath R. Konety, Peter R. Carroll

Research output: Contribution to journalReview articlepeer-review

27 Scopus citations

Abstract

Introduction: Although randomized controlled trials (RCTs) remain the gold standard for determining evidence-based clinical practices, large disease registries that enroll large numbers of patients have become paramount as a relatively cost-effective additional tool. Methods: We highlight the advantages of disease registries focusing on the example of prostate cancer and the Cancer of the Prostate Strategic Urologic Research Endeavor (CaPSURE™) registry. Results: CaPSURE collects approximately 1,000 clinical and patient-reported variables, in over 13,000 men that are enrolled. Thus far, CaPSURE has yielded over 130 peer-reviewed publications, with several others in press, in key areas of risk migration, practice patterns, outcome prediction, and quality of life outcomes. Conclusions: Disease registries, like CaPSURE complement RCTs and CaPSURE, have provided a means to better understand many aspects of prostate cancer epidemiology, practice patterns, oncologic and HRQOL outcomes, and costs of care across populations. Specialized observational disease registries such as CaPSURE provide insight and have broad implications for disease management and policy.

Original languageEnglish (US)
Pages (from-to)265-271
Number of pages7
JournalWorld Journal of Urology
Volume29
Issue number3
DOIs
StatePublished - Jun 2011

Bibliographical note

Funding Information:
Patients are treated according to their physicians’ usual practices and patient preferences and are followed until time of death or withdrawal from the study. Periodic, random sample chart review ensures completeness and accuracy of data collected and entered. Additional details regarding project methodology have been reported previously [1]. CaPSURE is managed by the Department of Urology at the UCSF Helen Diller Family Comprehensive Cancer Center. It was funded from inception to 2007 through an unrestricted education grant from TAP Pharmaceutical Products, Inc., and currently is supported through Abbott Labs (Chicago, IL) and several collaborative Federal grants.

Funding Information:
CaPSURE is a research partnership with industry (initially funded by TAP pharmaceuticals) under IRB approval. Data integrity has been maintained free of conflict of interest by thoughtful and transparent methodology and reporting. Data analyses and decision for publication of CaPSURE results have always rested with academic investigators without the influence of industry. Currently, CaPSURE is supported by a combination of gifted funds from Abbott Laboratories along with a growing portfolio of federal grants to ensure registry continuity and maintenance.

Keywords

  • CaPSURE
  • Disease registries
  • Prostatic neoplasms

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