American brain tumor association adolescent and young adult primary brain and central nervous system tumors diagnosed in the United States in 2008-2012

QT Ostrom, H Gittleman, PM De Blank, JL Finlay… - Neuro …, 2016 - academic.oup.com
QT Ostrom, H Gittleman, PM De Blank, JL Finlay, JG Gurney, R McKean-Cowdin
Neuro-oncology, 2016academic.oup.com
Background CBTRUS is a population-based site-specific registry in the US that works in
partnership with a public cancer surveillance organization, the CDC's National Program of
Central Registries (NPCR), and from which data are directly received under a special
agreement. This agreement permits transfer of data through the NPCR Cancer Surveillance
System (NPCR-CSS) Submission Specifications mechanism. CBTRUS researchers
combine the NPCR data with data from the NCI SEER program 9 which was established for …
Background
CBTRUS is a population-based site-specific registry in the US that works in partnership with a public cancer surveillance organization, the CDC's National Program of Central Registries (NPCR), and from which data are directly received under a special agreement. This agreement permits transfer of data through the NPCR Cancer Surveillance System (NPCR-CSS) Submission Specifications mechanism. CBTRUS researchers combine the NPCR data with data from the NCI SEER program 9 which was established for national cancer surveillance in the early 1970s. All data from NPCR and SEER originate from tumor registrars who adhere to the Uniform Data Standards (UDS) for malignant and non-malignant brain and CNS tumors as directed by the North American Association of Central Cancer Registries (NAACCR)(http://www. naaccr. org) and report these data to the central cancer registry in their state. Along with the UDS, there are quality control checks and a system for rating each central cancer registry to further insure that these data are reported as accurately and completely as possible. As a surveillance partner, CBTRUS can, therefore, report high quality data on brain and CNS tumors with histological specificity useful to the communities it serves. Its database represents the largest aggregation of population-based data on the incidence of primary brain and CNS tumors in the US. Aggregate information on all cancers from all central cancer registries in the United States, including primary brain and CNS, is available in United States Cancer Statistics. 7, 10
Oxford University Press