Prostate Cancer Registries: Current Status and Future Directions

Giorgio Gandaglia, Freddie Bray, Matthew R. Cooperberg, R. Jeffrey Karnes, Michael J. Leveridge, Kim Moretti, Declan G. Murphy, David F. Penson, David C. Miller

Research output: Contribution to journalArticle

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.
Original languageEnglish
Pages (from-to)998 - 1012
Number of pages15
JournalEuropean Urology
Volume69
Issue number6
DOIs
Publication statusPublished - Jun 1 2016

Fingerprint

Registries
Prostatic Neoplasms
Population
Direction compound
Healthcare Disparities
Outcome Assessment (Health Care)
Databases
Quality of Health Care
Information Storage and Retrieval
Disease Management
Research
Health Personnel
Health Services
Epidemiologic Studies
Randomized Controlled Trials
Quality of Life
Costs and Cost Analysis
Mortality
Incidence

Keywords

  • Disease-specific outcomes
  • Epidemiology
  • Population-based
  • Prospective registries
  • Prostate cancer
  • Statistical approaches

ASJC Scopus subject areas

  • Urology

Cite this

Gandaglia, G., Bray, F., Cooperberg, M. R., Karnes, R. J., Leveridge, M. J., Moretti, K., ... Miller, D. C. (2016). Prostate Cancer Registries: Current Status and Future Directions. European Urology, 69(6), 998 - 1012. https://doi.org/10.1016/j.eururo.2015.05.046

Prostate Cancer Registries: Current Status and Future Directions. / Gandaglia, Giorgio; Bray, Freddie; Cooperberg, Matthew R.; Karnes, R. Jeffrey; Leveridge, Michael J.; Moretti, Kim; Murphy, Declan G.; Penson, David F.; Miller, David C.

In: European Urology, Vol. 69, No. 6, 01.06.2016, p. 998 - 1012.

Research output: Contribution to journalArticle

Gandaglia, G, Bray, F, Cooperberg, MR, Karnes, RJ, Leveridge, MJ, Moretti, K, Murphy, DG, Penson, DF & Miller, DC 2016, 'Prostate Cancer Registries: Current Status and Future Directions', European Urology, vol. 69, no. 6, pp. 998 - 1012. https://doi.org/10.1016/j.eururo.2015.05.046
Gandaglia G, Bray F, Cooperberg MR, Karnes RJ, Leveridge MJ, Moretti K et al. Prostate Cancer Registries: Current Status and Future Directions. European Urology. 2016 Jun 1;69(6):998 - 1012. https://doi.org/10.1016/j.eururo.2015.05.046
Gandaglia, Giorgio ; Bray, Freddie ; Cooperberg, Matthew R. ; Karnes, R. Jeffrey ; Leveridge, Michael J. ; Moretti, Kim ; Murphy, Declan G. ; Penson, David F. ; Miller, David C. / Prostate Cancer Registries: Current Status and Future Directions. In: European Urology. 2016 ; Vol. 69, No. 6. pp. 998 - 1012.
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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.",
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