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.

How can we Optimize the Use of Prostate Cancer Registries?

“…Several registries are currently available in PCa [2]. These registries can be classified in two main categories: population-based versus prospective patient registries.…”

“…These registries can be classified in two main categories: population-based versus prospective patient registries. The term population-based registry refers to the systematic collection of data on all patients with a certain disease within a determined population or geographic area [2]. Typical examples of population-based registries in the field of PCa are represented by the Surveillance, Epidemiology, and End Results (SEER), the SEER-Medicare and the Prostate Cancer data Base Sweden (PCBaSe) databases [2,6].…”

“…This is particularly important in the setting of prostate cancer (PCa) given its increasing incidence with age and the relatively prolonged natural history of the disease itself [5]. Studies based on registries might in part circumvent these limitations, where the inclusion of large cohorts of men treated at the community level, as well as long follow-up intervals, might provide a valid data source to give answers to clinically relevant questions [2][3][4]. Therefore, findings obtained in the context of cancer registries should not be entirely disputed but rather integrated with observations coming from randomized controlled trials to achieve high-level clinically relevant evidence [4].…”

“…Nonetheless, investigations relying on cancer registries, which are organized systems that collect data from a specific population affected by a particular disease [2], can often provide unique information that allows clinicians to understand the natural history of the disease itself, ultimately improving its clinical management. Although randomized controlled trials will continue to provide the highest level of evidence in the future, they might be limited by poor accrual, relatively short follow-up intervals and inclusion of highly selected cohorts that may limit the generalizability of their findings [1,[3][4].…”

Disease-Specific Survival in Prostate Cancer Patients : Results from the Scandinavian Prostate Cancer Group (SPCG) Trial No. 5 and Regional Cancer Register Data

“…Although the patient register has proved to be an effective tool in the improvement of health care, it is important to ensure that patients benefit from a register, otherwise they may consume an enormous amount of resources, and intrude into patient integrity without providing data that is useful in day-to-day medical care. Gorgio Gandaglia et al evaluated existing prostate cancer registers, describing their strengths and limitations, and the potential role they may have in outcome research [12]. The conclusion of this review was that large registers play an increasingly important role in advancing PCa research and care compared to randomised controlled trials, although those, in their opinion, still provide the highest level of evidence.…”