National Prostate Cancer Registries: Contemporary Trends of Prostate Cancer in the United States

Abstract

No AccessUrology Practicethe Specialty1 Nov 2014National Prostate Cancer Registries: Contemporary Trends of Prostate Cancer in the United States Ahmed A. Hussein, Christopher J. Welty, Jeanette Broering, Matthew R. Cooperberg, and Peter R. Carroll Ahmed A. HusseinAhmed A. Hussein Department of Urology and Helen Diller Family Comprehensive Cancer Center, San Francisco, California Department of Urology, Cairo University, Egypt No direct or indirect commercial incentive associated with publishing this article. More articles by this author , Christopher J. WeltyChristopher J. Welty Department of Urology and Helen Diller Family Comprehensive Cancer Center, San Francisco, California No direct or indirect commercial incentive associated with publishing this article. More articles by this author , Jeanette BroeringJeanette Broering Department of Urology and Helen Diller Family Comprehensive Cancer Center, San Francisco, California No direct or indirect commercial incentive associated with publishing this article. More articles by this author , Matthew R. CooperbergMatthew R. Cooperberg Department of Epidemiology and Biostatistics, University of California-San Francisco, San Francisco, California Financial interest and/or other relationship with Myriad, Genomic Health, GenomeDx, Dendreon, Astellas, Janssen and Abbott. More articles by this author , and Peter R. CarrollPeter R. Carroll Department of Urology and Helen Diller Family Comprehensive Cancer Center, San Francisco, California Financial interest and/or other relationship with Myriad Genetics, Genomic Health International, Takeda, GHI and Medivation/Astellas. More articles by this author View All Author Informationhttps://doi.org/10.1016/j.urpr.2014.07.005AboutFull TextPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract Introduction: Randomized clinical trials are considered the gold standard for evidence-based practices but strict inclusion and exclusion criteria, costs to perform them and the time required to design and complete them may limit generalizability, followup and timeliness. Observational studies based on well designed, large volume patient registries may be more flexible in that scope. Such registries can be modified with time to incorporate new treatments as they emerge. Methods: We describe the design, objectives, funding mechanisms and results to date of the major prostate cancer registries in the United States, highlighting as examples PCOS, CaPSURE™, PROST-QA, CEASAR, MUSIC and AQUA. Results: Registries and collaborations have provided valuable knowledge for prostate cancer regarding oncologic and health related quality of life outcomes among treatments, changes in disease prevalence, staging, national practice trends and health service utilization. Conclusions: While there are important limitations to observational data, registries will continue to have an important and growing role in advancing prostate cancer care as a complement to data from clinical trials and traditional cohort studies. References 1 : Premature termination of genitourinary cancer clinical trials. J Clin Oncol2014; 32. abstract 288. Google Scholar 2 : Comparison of health-related quality of life 5 years after SPIRIT: Surgical Prostatectomy Versus Interstitial Radiation Intervention Trial. J Clin Oncol2011; 29: 362. Google Scholar 3 Observation or Radical Treatment in Patients With Prostate Cancer. Available at https://clinicaltrials.gov/ct2/show/record/NCT00499174?term=Observation+or+Radical+Treatment+in+Patients+With+Prostate+Cancer&rank=1. Accessed June 10, 2014. Google Scholar 4 National Cancer Institute: SEER Cancer Statistics Factsheets—Prostate Cancer. Available at http://seer.cancer.gov/statfacts/html/prost.html. Accessed June 10, 2014. Google Scholar 5 : Registries for Evaluating Patient Outcomes: A User’s Guide. Rockville: Agency for Healthcare Research and Quality2014. Available at http://www.effectivehealthcar