Reporting tumor genomic test results to SEER registries via linkages

• Published in: Journal of the National Cancer Institute. Monographs 2024-08, Vol.2024 (65), p.168-179
• Main Authors: Petkov, Valentina I, Byun, Jung S, Ward, Kevin C, Schussler, Nicola C, Archer, Natalie P, Bentler, Suzanne, Doherty, Jennifer A, Durbin, Eric B, Gershman, Susan T, Cheng, Iona, Insaf, Tabassum, Gonsalves, Lou, Hernandez, Brenda Y, Koch, Lori, Liu, Lihua, Monnereau, Alain, Morawski, Bozena M, Schwartz, Stephen M, Stroup, Antoinette, Wiggins, Charles, Wu, Xiao-Cheng, Bonds, Sarah, Negoita, Serban, Penberthy, Lynne
• Format: Article
• Language: English
• Subjects: Female; Genetic Testing - methods; Genetic Testing - statistics & numerical data; Genomics - methods; Humans; Male; Medical Record Linkage - methods; National Cancer Institute (U.S.); Neoplasms - diagnosis; Neoplasms - epidemiology; Neoplasms - genetics; Registries - statistics & numerical data; SEER Program - statistics & numerical data; United States - epidemiology
• ISSN: 1052-6773; 1745-6614; 1745-6614
• DOI: 10.1093/jncimonographs/lgae013

Precision medicine has become a mainstay of cancer care in recent years. The National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) Program has been an authoritative source of cancer statistics and data since 1973. However, tumor genomic information has not been adequately captured in the cancer surveillance data, which impedes population-based research on molecular subtypes. To address this, the SEER Program has developed and implemented a centralized process to link SEER registries' tumor cases with genomic test results that are provided by molecular laboratories to the registries. Data linkages were carried out following operating procedures for centralized linkages established by the SEER Program. The linkages used Match*Pro, a probabilistic linkage software, and were facilitated by the registries' trusted third party (an honest broker). The SEER registries provide to NCI limited datasets that undergo preliminary evaluation prior to their release to the research community. Recently conducted genomic linkages included OncotypeDX Breast Recurrence Score, OncotypeDX Breast Ductal Carcinoma in Situ, OncotypeDX Genomic Prostate Score, Decipher Prostate Genomic Classifier, DecisionDX Uveal Melanoma, DecisionDX Preferentially Expressed Antigen in Melanoma, DecisionDX Melanoma, and germline tests results in Georgia and California SEER registries. The linkages of cancer cases from SEER registries with genomic test results obtained from molecular laboratories offer an effective approach for data collection in cancer surveillance. By providing de-identified data to the research community, the NCI's SEER Program enables scientists to investigate numerous research inquiries.