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Neurooncol Pract. 2019 Sep;6(5):330-339. doi: 10.1093/nop/npz029. Epub 2019 Jul 2.

Cancer collection efforts in the United States provide clinically relevant data on all primary brain and other CNS tumors.

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Central Brain Tumor Registry of the United States, Hinsdale, IL, USA.
Case Comprehensive Cancer Center, Case Western Reserve University School of Medicine, Cleveland, OH, USA.
Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA.
North American Association of Central Registries, Springfield, IL, USA.
Department of Medicine, Section of Epidemiology and Population Sciences, Dan L. Duncan Comprehensive Cancer Center, Baylor College of Medicine, Houston, TX, USA.
Division of Cancer Prevention and Control, Centers for Disease Control and Prevention, Atlanta, GA, USA.


Cancer surveillance is critical for monitoring the burden of cancer and the progress in cancer control. The accuracy of these data is important for decision makers and others who determine resource allocation for cancer prevention and research. In the United States, cancer registration is conducted according to uniform data standards, which are updated and maintained by the North American Association of Central Cancer Registries. Underlying cancer registration efforts is a firm commitment to ensure that data are accurate, complete, and reflective of current clinical practices. Cancer registries ultimately depend on medical records that are generated for individual patients by clinicians to record newly diagnosed cases. For the cancer registration of brain and other CNS tumors, the Central Brain Tumor Registry of the United States is the self-appointed guardian of these data. In 2017, the Central Brain Tumor Registry of the United States took the initiative to promote the inclusion of molecular markers found in the 2016 WHO Classification of Tumours of the Central Nervous System into information collected by cancer registries. The complexities of executing this latest objective are presented according to the cancer registry standard-setting organizations whose collection practices for CNS tumors are directly affected.


CBTRUS; brain and CNS tumors; cancer collection; cancer surveillance

[Available on 2020-09-20]

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