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Vol. 8, 1117–1121, December 1999
Cancer Epidemiology, Biomarkers & Prevention
Review
The Surveillance, Epidemiology, and End Results Program:
A National Resource
Benjamin F. Hankey,1 Lynn A. Ries, and
Brenda K. Edwards
Surveillance Research Program, Division of Cancer Control and Population
Sciences, National Cancer Institute, Bethesda, Maryland 20892
The fight against cancer escalated in 1971 with the introduction
of the National Cancer Act during the presidency of Richard M.
Nixon. Since that time, there have been dramatic developments
in a number of research areas including prevention, screening,
and treatment that have had a major impact on our ability to
control cancer. An integral part of the fight against cancer has
been the ability to monitor the occurrence of cancer in the
population and assess the impact of the introduction of advances in prevention, screening, and treatment. For more than
25 years, these functions have been performed by the SEER2
Program, which is based at the NCI in the Division of Cancer
Control and Population Sciences. The purpose of this review is
to briefly describe cancer surveillance at the NCI. The SEER
Program is the centerpiece of these activities, with various
surveillance and research functions arrayed around it to take
full advantage of its potential.
The SEER Program is a sequel to two earlier NCI programs, the End Results Program and the Third National Cancer
Survey (1). Case ascertainment and data collection for the
SEER Program began with January 1, 1973 diagnoses in several geographic areas of the United States and its territories.
Those areas that have participated in the program since 1975
include the states of Connecticut, Iowa, New Mexico, Utah, and
Hawaii and the metropolitan areas of Detroit, San Francisco/
Oakland, Seattle, and Atlanta. Subsequent additions to the
program included 10 predominantly black rural counties in
Georgia in 1978 and American Indians residing in Arizona in
1980. In 1992, the program was further expanded to increase
coverage of minority populations, especially Hispanics. The
two new areas added were Los Angeles County and four
counties in the San Jose/Monterey area south of San Francisco.
Alaska natives in Alaska are currently being added to those
populations covered by SEER. The SEER Program currently
includes population-based data from about 14% of the United
States population and is reasonably representative of subsets of
the different racial/ethnic groups residing in the United States.
Fig. 1 provides a map of the SEER areas, and Fig. 2 gives the
percentages and sizes of various populations included in the
SEER Program.
Received 4/21/99; revised 6/29/99; accepted 7/8/99.
The costs of publication of this article were defrayed in part by the payment of
page charges. This article must therefore be hereby marked advertisement in
accordance with 18 U.S.C. Section 1734 solely to indicate this fact.
1
To whom requests for reprints should be addressed, at Health & Human
Services, National Cancer Institute, EPN, Room 343J, 6130 Executive Boulevard,
Bethesda, MD 20892.
2
The abbreviations used are: SEER, Surveillance, Epidemiology, and End Results; NCI, National Cancer Institute; PC, personal computer.
The issue of the representativeness of SEER areas with
regard to cancer incidence is frequently raised. Fig. 3 presents
some comparisons of interest for SEER areas versus the total
United States based on ecological data from the 1990 census.
SEER areas tend to be more urban and have a larger percentage
of foreign-born individuals. This at least partially explains why
SEER cancer mortality rates deviate somewhat from those for
the total United States, even within racial/ethnic groups. However, with few exceptions, the trends in mortality rates for
individual cancers observed for SEER areas are generally consistent with those for the total United States (2). These observations indicate that it is reasonable to assume that cancer
incidence trends for SEER are generally representative of those
for the total United States.
The objectives of the SEER Program include: (a) developing and reporting estimates of cancer incidence and mortality
on a periodic basis for the total United States; (b) monitoring
annual cancer incidence trends to identify unusual changes in
specific forms of cancer occurring in population subgroups
defined by geographic, demographic, and social characteristics
and providing insight into their etiology; (c) providing continuing information on changes over time in the extent of disease at
diagnosis, trends in therapy, and associated changes in patient
survival; and (d) promoting studies designed to identify factors
pertaining to the environment, occupation, socioeconomic status, tobacco, diet, screening practices, patterns of care, and
determinants of the length and quality of patient survival that
are amenable to cancer control interventions.
The primary cancer surveillance publication is the Cancer
Statistics Review, which is produced annually (3). It includes
data for the time period 1973 to the most recent year for which
data are available. Cancer incidence, mortality, and patient
survival rates and other statistics of interest are presented by
anatomical site. For major cancers, the rates are also broken
down by race/ethnicity and geographic area.
Monographs are also produced periodically. A monograph
on the histology of cancer was published in 1995 as a supplement to the journal Cancer (4). More recently, a monograph
entitled Racial/Ethnic Patterns of Cancer in the United States
1988 –1992 (5) provides a description of the occurrence of the
major cancers among most racial/ethnic groups in the United
States. A monograph on prostate cancer entitled SEER Prostate
Cancer Trends, 1973–1995 (6) that provides detailed data on
incidence, mortality, patient survival, and treatment is currently
being published. Other monographs are in preparation, including one on childhood cancer and one on patient survival. A
detailed list of SEER publications including monographs, recent reports, data collection manuals, manuals on registry operations, and training manuals pertaining to data collection are
available from the SEER Web site.3 It is also possible to
view/print many of these publications directly from the Web.
3
The SEER Web site is located at http://www-seer.ims.nci.nih.gov/.
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Review: The SEER Program
Fig. 1.
Geographic areas covered by the SEER Program.
Data sources used by SEER include the SEER database,
which contains records on more than two million cancers and is
growing at the rate of more than 160,000 records per year;
cancer mortality data for the total United States as obtained
from the National Center for Health Statistics; and population
estimates as obtained through an interagency agreement with
the Census Bureau.
It is possible to obtain a SEER public use file on a
CD-ROM free of charge. The file includes information on
individual cancers diagnosed in SEER areas between 1973 and
the most recent year for which data are available. Personal
identifiers are not included. Instructions for obtaining a public
use file are available at the SEER Web site. Currently, SEER
sends out public use files at the rate of nearly 1500/year, up
from less than 50/year 10 years ago.
Since its inception in 1973, the individual SEER cancer
registries have taken advantage of the potential for research
offered by such a mechanism, particularly the opportunity to
conduct population-based epidemiological studies. Hundreds of
studies have been conducted and reported, with support generally provided by grants from the federal government. A search
of the National Library of Medicine’s database PUBMED using
only the term SEER identified in excess of 570 publications for
the time period 1978 –1999, many of which either include an
analysis of SEER data or refer to cancer statistics based on
SEER data.
The SEER program contractors include a number of universities involved in cancer research. Thus, there is an infrastructure for conducting analytic epidemiological studies on a
variety of emerging issues in cancer prevention and control that
can be used by the NCI. The ability to do special studies was
established in the early 1990s. The workscopes of SEER contracts were modified to include the capabilities of interviewing
patients, conducting surveys of the covered populations, obtaining biological materials from patients and survey respondents, conducting methodological research that uses cancer
registry data, and establishing tissue banks. Standard competitive procurement procedures within the SEER framework have
been used to plan and fund studies on a wide range of topics that
have included identification of risk factors, quality of life,
statistical modeling, etiology of trends in cancer rates, and
operational issues pertaining to data collection and reporting.
A wide variety of research activities use the SEER database and/or the SEER special study mechanism. An example of
a study done through the SEER Special Study mechanism is a
study on quality of life after treatment for localized prostate
cancer that has been carried out in six SEER areas. Approximately 3500 men were interviewed shortly after diagnosis and
treatment and at subsequent points in time. Findings from this
study will provide population-based estimates of the proportions of patients suffering various side effects from radiation
and surgery.
Three studies examining the impact of prostate-specific
antigen testing on recent trends in prostate cancer rates are in
press (7–9). Recently, a report to the nation on the status of
cancer was published by researchers from the NCI, the American Cancer Society, and the Centers for Disease Control and
Prevention using SEER data as well as mortality data from the
National Center for Health Statistics (10). Other recent reports
deal with how prostate-specific antigen testing has affected
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Cancer Epidemiology, Biomarkers & Prevention
Fig. 2.
Percentages and sizes of the populations included in SEER areas.
prostate cancer incidence (11) and changing patterns in the
incidence of esophageal and gastric cancer in the United States
(12). SEER data have been used in the development of riskbased recommendations for screening women under age 50
(13). Patterns of care studies have been conducted for selected
cancers to address issues pertaining to treatment patterns (14).
The occurrence of multiple cancers has been studied for selected primary tumors, with one example being testicular cancer (15). Statistical methods have been used in conjunction with
SEER data to estimate asymptomatic incidence and duration of
prostate cancer (16), and new methods have been developed to
evaluate the statistical significance of space-time clusters of
cancer (17). Statistical methods have also been developed to
estimate lifetime and age-conditional probabilities of developing cancer (18). A number of other studies in which researchers
at the various registries have taken a lead role have been
performed under the SEER Special Study mechanism. A sampling of the publications stemming from these studies is included in the reference list (19 –39).
Other research activities include the development of new
statistical methods for cancer surveillance. Methods are being
developed to estimate incidence and prevalence rates for the
total United States and at the state level using patient survival
data from SEER areas and cancer mortality data for the total
United States. Methods have also been developed for describing trends in age-adjusted rates and partitioning linear trends
(40, 41). Incidence-based mortality methodology has been developed that provides for partitioning cancer mortality trends
based on variables identified at diagnosis (42). This methodology also provides a method for assessing the impact of an
intervention introduced into the general population on the trend
in mortality rates for the cancer expected to be affected. This is
only a sampling of recent reports from researchers involved in
cancer surveillance at the NCI.
SEER data have been linked to the Medicare database.
There is a public use file containing data from the linked file
that can be obtained for research purposes. Interested researchers must submit a proposal describing their proposed study. The
proposal is reviewed by both the Health Care Finance Administration and the NCI. Details about this file can be obtained on
the Web.4
Cancer surveillance at the NCI has been expanded to
4
Further information is available at http://www-dccps.ims.nci.nih.gov/arb/.
Fig. 3. Selected characteristics of SEER areas versus the total United States.
The populations within the coverage areas are included in the SEER areas. Native
Alaskans in Alaska and Arizona Indians are not included.
include the evaluation of patterns and trends in cancer-related
risk factors, health behaviors, and health services and their
effects on trends in cancer incidence, morbidity, mortality, and
patient survival. Many of the studies are being done in SEER
areas. Research focuses on: (a) identifying, improving, and
developing databases and methods for cancer-related surveillance research; (b) maintaining, updating, and disseminating
these databases and methods; and (c) promoting and facilitating
their use among investigators within the extramural research
community and federal agencies.
Much work has gone into facilitating the use of the SEER
database for research purposes. PC-based software has been
developed that greatly enhances the ability of those who obtain
SEER public use files to analyze the data. A program
(SEER*Stat) has been developed that allows for the computation of frequency distributions, incidence rates, trends (percent
changes and annual percent changes), survival rates (observed
and relative), and tests to assess the statistical significance of
trends and differences in rates. This software is included free of
charge with the public use files that the SEER Program provides to outside investigators. Non-SEER data can also be
loaded into SEER*Stat using a software package called
SEER*Prep. SEER*Stat has been adopted with great enthusiasm by the research community. In addition, a Cancer Query
System (CANQUES) is accessible at the SEER Web site. It is
a large database of 5.7 million precalculated cancer incidence
and survival statistics that have been formatted for easy retrieval.
NCI investigators involved in surveillance activities have
developed new statistical tools that address important cancer
surveillance issues including: (a) a Prevalence System that uses
incidence and survival data from 1950 to the present for the
State of Connecticut to predict prevalence in the United States;
(b) a PC-based system that uses incidence, mortality, and population data to calculate the probability of developing or dying
from cancer (DevCan); and (c) a computer modeling program
for the PC that is used to estimate the effects of various
prevention, screening, and treatment interventions on cancer
incidence, prevalence, and mortality (Can*Trol). Further information about these tools is available on the internet.4
NCI staff responsible for managing the SEER Program
interact with a number of organizations that are also involved in
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cancer surveillance or related activities. These include the
North American Association of Central Cancer Registries, the
American Cancer Society, the American College of Surgeons,
the National Cancer Registrars Association, the International
Association of Cancer Registries, the International Association
for Research on Cancer, and the WHO. We also work with
other federal agencies involved in cancer surveillance including
the Center for Disease Control and Prevention. These activities
include setting standards for data collection by cancer registries, providing for the interchange of ideas and tools for cancer
surveillance, facilitating the training and credentialing of tumor
registrars, collaborating in the analysis and reporting of cancer
rates, and exploring the feasibility of a national cancer reporting
system.
Technical assistance is provided to non-SEER registries
upon request, subject to available resources. The nature of this
assistance includes conducting workshops on data collection
procedures and registry operations and training classes in the
use of SEER*Stat. In the latter case, the training includes
putting the registry’s database into SEER*Stat, with the remainder of the training devoted to analyzing the registry’s data.
Cancer surveillance activities at the NCI, including those
directly involving the SEER Program and those that go beyond
the SEER Program, have been reviewed by a committee of
researchers from within and outside the institute (43). Recommendations for the future have been made in a number of areas.
The first priority is to expand the scope of surveillance research
through additional data collection and methods development.
Specific activities will include: (a) collection of data on patterns
of care, health status, and quality of life as well as cohort
studies of newly diagnosed cancer patients for the purpose of
documenting levels and trends in these parameters; (b) collection of risk factor and screening data in defined populations,
particularly those covered by high-quality cancer registration;
(c) development of research methods to measure the dimensions of the cancer burden and factors affecting the burden as
well as methods to explain patterns and trends in cancer rates;
and (d) exploration of the feasibility and utility of using geographic information systems for geocoding surveillance data
and reporting geographic relationships among screening measures, risk factors (including environmental exposures), and
improved cancer outcomes.
A second area of focus is to expand the scope of surveillance to improve the representativeness of cancer burden estimates. Specific activities will include expanding SEER population coverage to improve representation of ethnic minority
and underserved populations including rural African Americans, Hispanics from Caribbean countries, American Indians,
residents of Appalachia and other rural areas, especially those
of lower socioeconomic classes; develop methods for improving national estimates of the cancer burden; and work with
other organizations involved in cancer surveillance to develop
a national cancer surveillance plan.
A third area to be addressed is the production and dissemination of a national report card on the cancer burden. Specific
activities will include the collection, analysis, and dissemination of data on important cancer outcomes and trends in risk
factors, screening, and treatment to be incorporated into a
national cancer report card and the development of improved
methods for disseminating information via the report card and
other NCI communications.
The fourth area to be addressed is the support of molecular
and genetics research for surveillance. Specific activities will
include the development of valid tools to assess family history
of cancer that will provide for the collection of data on the
population prevalence of familial cancers and the investigation
of the feasibility of expanding population-based molecular and
genetic biomarker studies within the Cancer Surveillance Research Program.
The final area to receive attention is the development of a
training strategy for individuals interested in cancer surveillance research. Specifically, training pertaining to the needs of
surveillance sciences will be developed along with a plan to
incorporate surveillance training as a priority in mechanisms for
training cancer prevention and control scientists. Much more
detail is provided in the Cancer Surveillance Research Implementation Plan (43), which can be obtained on the Web.5
We have attempted to give a brief overview of cancer
surveillance at the NCI with regard to both current activities
and future directions. The increase in the scope of surveillance
activities including the enhancement of research opportunities
will involve the collaborative efforts of federal and state institutions, the academic and medical communities, professional
and voluntary health organizations, industry, and patient/public
action groups devoted to the fight against cancer.
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5
The Cancer Surveillance Research Implementation Plan can be obtained at
http://camp.nci.nih.gov/dccps/.
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Cancer Epidemiology, Biomarkers & Prevention
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The Surveillance, Epidemiology, and End Results Program: A
National Resource
Benjamin F. Hankey, Lynn A. Ries and Brenda K. Edwards
Cancer Epidemiol Biomarkers Prev 1999;8:1117-1121.
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