Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
Review
. 2019 Nov 1;125(21):3729-3737.
doi: 10.1002/cncr.32355. Epub 2019 Aug 5.

Unlocking the potential of population-based cancer registries

Thomas C Tucker  1   2 , Eric B Durbin  1   3 , Jaclyn K McDowell  1   2 , Bin Huang  1   4
Affiliations
Review

Unlocking the potential of population-based cancer registries

Thomas C Tucker et al. Cancer. .

Abstract

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.

Keywords: cancer burden; cancer surveillance; central cancer registries; external validity; outcomes research; population-based.

PubMed Disclaimer

Conflict of interest statement

The authors made no disclosures.

Figures

Figure 1
Figure 1
US populations covered by NAACCR‐certified registries: 1998 versus 2018.
Figure 2
Figure 2
Colorectal cancer screening in Kentucky (1999‐2014) from the Behavioral Risk Factor Surveillance System (accessed June 2016). After 1999, the Behavioral Risk Factor Surveillance System colorectal cancer screening questions were asked every other year as of 2002.
Figure 3
Figure 3
Kentucky colon and rectum cancer incidence rates (1999‐2015). All rates are per 100,000 and have been age‐adjusted to the 2000 US standard million population.
See this image and copyright information in PMC

References

    1. White MC, Babcock F, Hayes NS, et al. The history and use of cancer registry data by public health cancer control programs in the United States. Cancer. 2017;123(suppl 24):4969‐4976. - PMC - PubMed
    1. National Cancer Institute . List of SEER registries. https://seer.cancer.gov/registries/list.html. Accessed July 18, 2018.
    1. National Cancer Institute . Surveillance, Epidemiology, and End Results Program. https://seer.cancer.gov/. Accessed July 18, 2018.
    1. Centers for Disease Control and Prevention . National Program of Central Cancer Registries: about the program. https://www.cdc.gov/cancer/npcr/about.htm. Accessed July 18, 2018.
    1. Seiffert J, ed. Standards for Cancer Registries Volume II: Data Standards and Data Dictionary. Sacramento, CA: North American Association of Central Cancer Registries; 1997. - PubMed

Publication types

MeSH terms