Unlocking the potential of population-based cancer registries

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25 Scopus citations


Population-based cancer registries have improved dramatically over the last 2 decades. These central cancer registries provide a critical framework that can elevate the science of cancer research. There have also been important technical and scientific advances that help to unlock the potential of population-based cancer registries. These advances include improvements in probabilistic record linkage, refinements in natural language processing, the ability to perform genomic sequencing on formalin-fixed, paraffin-embedded (FFPE) tissue, and improvements in the ability to identify activity levels of many different signaling molecules in FFPE tissue. This article describes how central cancer registries can provide a population-based sample frame that will lead to studies with strong external validity, how central cancer registries can link with public and private health insurance claims to obtain complete treatment information, how central cancer registries can use informatics techniques to provide population-based rapid case ascertainment, how central cancer registries can serve as a population-based virtual tissue repository, and how population-based cancer registries are essential for guiding the implementation of evidence-based interventions and measuring changes in the cancer burden after the implementation of these interventions.

Original languageEnglish
Pages (from-to)3729-3737
Number of pages9
Issue number21
StatePublished - Nov 1 2019

Bibliographical note

Funding Information:
The work described in this article was supported by the National Cancer Institute (Surveillance, Epidemiology, and End Results contract HHSN2612018000131) and the Centers for Disease Control and Prevention (National Program of Cancer Registries cooperative agreement U58DP000810). Over the past several decades, population-based cancer registries have improved dramatically in both quantity and quality. There are 2 separate federal programs that provide financial support for population-based cancer surveillance programs in the United States. These programs are the Surveillance, Epidemiology, and End Results (SEER) program of the National Cancer Institute (NCI) and the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention (CDC). The NCI SEER program was established in 1973 to address components of the 1971 National Cancer Act. The NCI SEER program began with 7 population-based cancer registries. Over the years, the SEER program has expanded several times and now includes 20 state and urban population–based cancer registries. The SEER program works to “provide information on cancer statistics in an effort to reduce the burden of cancer among the U.S. population.” The CDC NPCR was established in 1992 by the Cancer Registries Amendment Act. Before the NPCR, “10 states had no registry, and most states with registries lacked the resources and legislative support they needed to gather complete data.” Today, the NPCR supports population-based cancer registries in 46 US states, the District of Columbia, Puerto Rico, the US Pacific Island Jurisdictions, and the US Virgin Islands. Together, the SEER and NPCR programs provide support for central cancer registries that cover the populations of all US states and the District of Columbia as well as US territories. Along with the increased number of population-based cancer registries, there has been a substantial increase in both the quantity and quality of data collected by these surveillance programs.

Publisher Copyright:
© 2019 The Authors. Cancer published by Wiley Periodicals, Inc. on behalf of American Cancer Society.


  • cancer burden
  • cancer surveillance
  • central cancer registries
  • external validity
  • outcomes research
  • population-based

ASJC Scopus subject areas

  • Oncology
  • Cancer Research


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