Completeness of required site-specific factors for brain and CNS tumors in the Surveillance, Epidemiology and End Results (SEER) 18 database (2004-2012, varying)

• Type of Material: Article
• Authors: Quinn T. Ostrom, Case Western Reserve University; Haley Gittleman, Case Western Reserve University; Carol Kruchko, Central Brain Tumor Registry of the United States (CBTRUS); David N. Louis, Harvard Medical School; Daniel Brat, Emory University; Mark R. Gilbert, National Institutes of Health; Valentina I. Petkov, National Cancer Institute; Jill S. Barnholtz-Sloan, Case Western Reserve University
• Language: English
• Date: 2016-10-01
• Publisher: Springer Verlag (Germany)
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2016, Springer Science+Business Media New York.
• Final Published Version (URL): http://dx.doi.org/10.1007/s11060-016-2217-7
• Title of Journal or Parent Work: Journal of Neuro-Oncology
• ISSN: 0167-594X
• Volume: 130
• Issue: 1
• Start Page: 31
• End Page: 42
• Grant/Funding Information: QTO, HG, and JSB-S were supported by the National Cancer Institute Case Comprehensive Cancer Center Support Grant (P30CA043703).; CBTRUS is honored to be included among the research grant recipients of the following organizations, which have contributed to the maintenance of the CBTRUS database: the Centers for Disease Control and Prevention (CDC) under Agreement 5U58DP00383, the Sontag Foundation, Genentech, Novocure, Inc., Celldex Therapeutics, Inc., AbbVie, Inc., along with the Musella Foundation, Voices Against Brain Cancer, Elekta, the Zelda Dorin Memorial Fund, as well as private and in kind donations.
• Keywords: Neurosciences & Neurology; GRADE GLIOMAS; ANAPLASTIC OLIGODENDROGLIOMAS; MGMT methylation; 1p/19q codeletion; CENTRAL-NERVOUS-SYSTEM; DNA-REPAIR GENE; Oncology; WHO grade; Clinical Neurology; MUTATIONS; Brain tumors; Science & Technology; TRIAL; Life Sciences & Biomedicine; CLASSIFICATION; Cancer registration; O-6-METHYLGUANINE-DNA METHYLTRANSFERASE; TEMOZOLOMIDE; MGMT PROMOTER METHYLATION
• Research Categories: Health Sciences, Pathology

Abstract

Cancer registries are an important source of population-level information on brain tumor incidence and survival. Surveillance, Epidemiology, and End Results (SEER) registries currently collect data on specific required factors related to brain tumors as defined by the American Joint Commission on Cancer, including World Health Organization (WHO) grade, MGMT methylation and 1p/19q codeletion status. We assessed ‘completeness’, defined as having valid values over the time periods that they have been collected, overall, by year, histology, and registry. Data were obtained through a SEER custom data request for four factors related to brain tumors for the years 2004–2012 (3/4 factors were collected only from 2010 to 2012). SEER*Stat was used to generate frequencies of ‘completeness’ for each factor overall, and by year, histology and registry. The four factors varied in completeness, but increased over time. WHO grade has been collected the longest, and showed significant increases in completeness. Completeness of MGMT and 1p/19q codeletion was highest for glioma subtypes for which testing is recommended by clinical practice guidelines. Completeness of all factors varied by histology and cancer registry. Overall, several of the factors had high completeness, and all increased in completeness over time. With increasing focus on ‘precision medicine’ and the incorporation of molecular parameters into the 2016 WHO CNS tumor classification, it is critical that the data are complete, and factors collected at the population level are fully integrated into cancer reporting. It is critical that cancer registries continue to collect established and emerging prognostic and predictive factors.