Cancer Surveillance in the US
Cancer surveillance is the systematic collection and analysis of data about cancer diagnoses, including information about the patient (e.g., date of birth, sex, race), the tumor (e.g., site of origin, stage, histology), and the initial course of treatment. Cancer registration is useful to the public health in many important ways. These data are used to measure cancer occurrence in the population, including incidence, mortality, survival, and patterns of care; to plan and evaluate cancer control programs; to prioritize the allocation of healthcare resources; and to advance populationâbased epidemiologic and health services research. Populationâbased cancer statistics can also be used to corroborate medical hypotheses. For example, the rapid rise and fall of endometrial cancer incidence rates that mirrored the rise and fall in the use of unopposed estrogen as menopausal hormone therapy affirmed the association between estrogen and endometrial cancer risk [3,4]. Likewise, the dramatic 7% decline in breast cancer incidence from 2002 to 2003 reflects the abrupt decrease in menopausal hormone use after the Womenâs Health Initiative study reported its association with increased breast cancer risk [5,6].
The coverage and quality of cancer surveillance data have improved greatly over time. The current system of cancer registration in the US involves hospital registries, which furnish data for the evaluation of care within the hospital, and populationâbased registries, which are usually associated with state health departments or related institutions. Hospital registries also serve as the primary data source for central state registries. The cancer registrar carries the major responsibility for data collection and other dayâtoâday registry operations [7]. As patients are increasingly being diagnosed and treated in outpatient settings, case finding by cancer registrars at central registries has expanded to other medical facilities, including physician offices, pathology laboratories, and freestanding treatment centers.
Registry operations and the quality of the data collected by the registrar are guided by standards established by the Commission on Cancer (CoC) of the American College of Surgeons, the Surveillance, Epidemiology, and End Results (SEER) Program of the National Cancer Institute (NCI), the National Program of Cancer Registries (NPCR) of the Centers for Disease Control and Prevention (CDC), the American Joint Committee on Cancer (AJCC), and the North American Association of Central Cancer Registries (NAACCR).
Surveillance, Epidemiology, and End Results Program
The NCIâs SEER Program was established as a result of the National Cancer Act of 1971, which mandated the collection, analysis, and dissemination of data to aid in the prevention, treatment, and diagnosis of cancer in the US [8]. Case ascertainment began on January 1, 1973. The original catchment area, known as SEER 9, covered 9% of the US population and included registries in five states (Connecticut, Iowa, New Mexico, Utah, and Hawaii) and four metropolitan areas (Detroit, Michigan; San FranciscoâOakland, California; Atlanta, Georgia; and SeattleâPuget Sound, Washington). The SEER 9 data are the only source for longâterm, populationâbased cancer incidence and survival trends in the US. The SEER program expanded over time to include 18 registries covering 28% of the population, including 26% of African Americans, 38% of Hispanics, 44% of American Indians and Alaska Natives, 50% of Asians, and 67% of Hawaiian/Pacific Islanders [9]. Since its inception, quality control has been an integral component of the SEER program, which is considered the gold standard for cancer registration around the world. Cancer incidence and survival data from SEER and cancer mortality data from the National Center for Health Statistics are published annually in the SEER Cancer Statistics Review.
National Program of Cancer Registries
In 1992, Congress enacted the Cancer Registries Amendment Act to establish the NPCR at the CDC [10]. At the time this legislation was passed, 10 states had no cancer registry and most states with registries lacked the resources necessary to achieve minimum reporting standards. Toda...