Prostate Cancer Registries: Current Status and Future Directions.

ABSTRACT

CONTEXT Disease-specific registries that enroll a considerable number of patients play a major role in prostate cancer (PCa) research. OBJECTIVE: To evaluate available registries, describe their strengths and limitations, and discuss the potential future role of PCa registries in outcomes research. EVIDENCE ACQUISITION We performed a literature review of the Medline, Embase, and Web of Science databases. The search strategy included the terms prostate cancer, outcomes, statistical approaches, population-based cohorts, registries of outcomes, and epidemiological studies, alone or in combination. We limited our search to studies published between January 2005 and January 2015. EVIDENCE SYNTHESIS: Several population-based and prospective disease-specific registries are currently available for prostate cancer. Studies performed using these data sources provide important information on incidence and mortality, disease characteristics at presentation, risk factors, trends in utilization of health care services, disparities in access to treatment, quality of care, long-term oncologic and health-related quality of life outcomes, and costs associated with management of the disease. Although data from these registries have some limitations, statistical methods are available that can address certain biases and increase the internal and external validity of such analyses. In the future, improvements in data quality, collection of tissue samples, and the availability of data feedback to health care providers will increase the relevance of studies built on population-based and disease-specific registries. CONCLUSIONS: The strengths and limitations of PCa registries should be carefully considered when planning studies using these databases. Although randomized controlled trials still provide the highest level of evidence, large registries play an important and growing role in advancing PCa research and care. PATIENT SUMMARY: Several population-based and prospective disease-specific registries for prostate cancer are currently available. Analyses of data from these registries yield information that is clinically relevant for the management of patients with prostate cancer.