Reporting tumor genomic test results to SEER registries via linkages

Valentina I. Petkov, National Cancer Institute, Bethesda, MD
Jung S. Byun, National Cancer Institute, Bethesda, MD
Kevin C. Ward, Emory University, Atlanta, GA
Nicola C. Schussler, Information Management Services, Inc, Calverton, MD
Natalie P. Archer, Texas Department of State Health Services, Austin, TX
Suzanne Bentler, The University of Iowa, Iowa City, IA
Jennifer A. Doherty, University of Utah, Salt Lake City, UT
Eric B. Durbin, University of Kentucky, Lexington, KY
Susan T. Gershman, Massachusetts Cancer Registry, Boston, MA
Iona Cheng, University of California, San Francisco, San Francisco, CA
Tabassum Insaf, New York State Cancer Registry, Albany, NY
Lou Gonsalves, Connecticut Tumor Registry, Hartford, CT
Brenda Y. Hernandez, University of Hawaii Cancer Center, Honolulu, HI
Lori Koch, Illinois State Cancer Registry, Springfield, IL
Lihua Liu, University of Southern California, Los Angeles, CA
Alain Monnereau, Cancer Registry of Greater California, Sacramento, CA
Bozena M. Morawski, Cancer Data Registry of Idaho, Boise, ID
Stephen M. Schwartz, Fred Hutchinson Cancer Center, Seattle, WA
Antoinette Stroup, New Jersey State Cancer Registry, Trenton, NJ
Charles Wiggins, University of New Mexico, Albuquerque, NM
Xiao-Cheng Wu, LSU Health Sciences Center - New Orleans
Sarah Bonds, National Cancer Institute, Bethesda, MD
Serban Negoita, National Cancer Institute, Bethesda, MD
Lynne Penberthy, National Cancer Institute, Bethesda, MD

Abstract

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.