Cancer Surveillance Informatics: Where Health Statistics, Information Systems, and Clinical Decision-Making Intersect

Manijeh Berenji, MD, MPH; May Darwish-Yassine, PhD


April 17, 2012

In This Article


Cancer continues to be a major public health problem in the United States, with projections for 1,638,910 new cancer diagnoses and 577,190 deaths in 2012 alone.[1]Despite considerable progress in identifying cancer cases, the United States still lacks a population-based cancer surveillance infrastructure to integrate information on cancer risk, geography, burden, cost, care, survivorship, and mortality.[2,3,4]

To better understand the burgeoning field of comprehensive population-based cancer surveillance informatics and its potential patient-centered clinical applications, we review the history of cancer surveillance in the United States, describe current systems, and evaluate the utility of informatics.

History of Cancer Surveillance

The first modern case registries in the United States emerged in the early 1900s in an effort to collect, manage, and analyze data on individuals diagnosed with cancer. Connecticut (1935) and California (1946) were the first states to create population-based cancer registries.[5]In 1971, the National Cancer Act led to the creation of the National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) program, which is responsible for collecting population-based data on cancer incidence and survival, including patient demographic characteristics, primary tumor site, tumor morphology and stage at diagnosis, first course of treatment, and follow-up for vital status.[6] The SEER database originally covered areas that comprised only 10% of the US population, expanding in the early 1990s and again in the early 2000s.

Moreover, in 1992, the Centers for Disease Control and Prevention (CDC) National Program of Cancer Registries (NPCR) was authorized through the Cancer Registries Amendment Act to enhance existing state cancer registries and establish new registries.[7] The NPCR supports central cancer registries in 45 states, the District of Columbia, Puerto Rico, and the US Pacific Island jurisdictions, representing 96% of the US population. By 2003, all states gained legal authority for their own cancer reporting, with additional federal support to implement cancer registries in states that had not already done so.[2]


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