CONTEXT - Disease-specific registries that enroll a considerable number of patients play a major role in prostate cancer (PCa) research.
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OBJECTIVE - To evaluate available registries, describe their strengths and limitations, and discuss the potential future role of PCa registries in outcomes research.
EVIDENCE AQUISITION - 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.
Eur Urol. 2015 Jun 6. pii: S0302-2838(15)00448-0. doi: 10.1016/j.eururo.2015.05.046. [Epub ahead of print]
Gandaglia G1, Bray F2, Cooperberg MR3, Karnes RJ4, Leveridge MJ5, Moretti K6, Murphy DG7, Penson DF8, Miller DC9.
1 Unit of Urology/Department of Oncology, San Raffaele Hospital, Milan, Italy.
2 Section of Cancer Surveillance, International Agency for Research on Cancer, Lyon, France.
3 Departments of Urology and Epidemiology & Biostatistics, Helen Diller Family Comprehensive Cancer Center, San Francisco, CA, USA.
4 Department of Urology, Mayo Clinic, Rochester, MN, USA.
5 Department of Urology, Queen's University, Kingston, Ontario, Canada.
6 South Australian Prostate Cancer Clinical Outcomes Collaborative, Repatriation General Hospital, Daw Park, and the University of South Australia and the University of Adelaide, South Australia, Australia.
7 Division of Cancer Surgery, University of Melbourne, Peter MacCallum Cancer Centre, Melbourne, Australia.
8 Department of Urologic Surgery, Vanderbilt University, and the VA Tennessee Valley Geriatric Research, Education, and Clinical Center (GRECC), Nashville, TN, USA.
9 Division of Urologic Oncology, Department of Urology, University of Michigan, Ann Arbor, MI, USA.