Japanese Journal of Clinical Oncology 30:171-173 (2000)
© 2000 Foundation for Promotion of Cancer Research
Cancer Registration in the United States
Markey Cancer Center, University of Kentucky, Lexington, Kentucky, USA
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INTRODUCTION |
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 TOP INTRODUCTION HOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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Cancer registries are one of the most important assets we have in improving the care of individual patients and in developing effective programs of cancer control. The hospital-based registry, through the accession and analysis of cancer cases seen in that hospital, provides information leading to the improvement of patient care. Information from the registry permits the evaluation of care given in that institution, serves as the basis for the continuing education of health care professionals in that hospital and stimulates the improvement of diagnosis and treatment.
Second, the population-based central cancer registry accessions all cases of cancer in defined populations, allowing us to determine cancer patterns among various populations, monitor trends over time, guide the planning and evaluation of cancer control programs, help prioritize health resource allocations and advance clinical, epidemiological and health services research (1). Both types of registries are essential parts of the current system of cancer registration in the United States and in turn are critical elements in local and national cancer control programs.
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HOSPITAL REGISTRIES |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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Hospital cancer registries accession patients receiving some or all of their definitive care in those institutions. Usually the registry will cover only a single institution, but there are some multiple/joint institution cancer registries, e.g. a single registry for two or more hospitals in the same or different communities. The data set collected in each case includes information about the patient, the clinical and pathological characterization of the cancer, the diagnostic methodology, the treatment(s) rendered, the treatment outcomes and patient survival. These data are then analyzed and used to assess current institutional medical practice, to identify issues of concern at any or all levels of case management, to identify specific patient populations with problems related to cancer management, to develop appropriate diagnostic or therapeutic interventions and, finally, to evaluate the outcomes from these interventions. It should be noted that these data elements are the basic ones needed by population-based registries which rely on hospitals to forward these data to the central registry.
Standards for the operation of hospital cancer registries have been developed primarily by the American College of Surgeons through its Commission on Cancer. In addition, the College has for many years been a major resource for training cancer registrars. In the last several years the independent National Cancer Registrars Association has also participated in training hospital registrars and is the one US organization responsible for certifying registrars.
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POPULATION-BASED REGISTRIES |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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Population-based registries, often called central registries, may deal with all cancers in the population or with one specific cancer, e.g. breast or cervix. The defined population may be in one or more geographic areas, e.g. in metropolitan areas or state wide.
Some population-based cancer registries are incidence-only registries, concerned only with collecting and analyzing cancer incidence data in order to determine cancer rates and their trends in the population. Or they may, as Austin notes, ‘serve a broader function, often combining incidence, patient care and end results reporting with various other research and cancer control activities’ (2).
Case finding and data collection are two of the major challenges confronting population-based registries. Formerly, this was simply a matter of collecting diagnostic and treatment data from hospitals. However, in more recent times, as patients are increasingly seen in non-hospital settings, central registries have had to take on more of the responsibility for finding cases and abstracting clinical records from a variety of sources, including non-hospital pathology laboratories, free-standing surgery centers, non-hospital radiation therapy facilities and the offices of medical oncologists and other physicians. This is usually accomplished by employing trained personnel to visit patient care sites.
At all levels, however, whether cases are accessioned at the hospital or at regional, state or national levels, the essential characteristics of an effective registry include the accession of complete and accurate cancer case data in a timely manner according to accepted standards, having effective systems of data management which will permit and facilitate the analysis of data and having effective systems of disseminating information gained by the registries, including the feedback of information to the population providing the data. Finally, cancer registry information must be used! As Foege, Hogan and Newton observed, ‘The reason for collecting, analyzing and disseminating information on a disease is to control that disease. Collection and analysis should not be allowed to consume resources if action does not follow’ (3).
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STATE CANCER REGISTRIES |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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Most population-based state cancer registries are located within, or are closely related to, state health departments and most are funded at least partially by state government. Many of them began as incidence-only registries, but most are evolving, or have evolved, into longitudinal registries which also collect treatment and survival data. State cancer registries are primarily involved with cancer control efforts, but some carry out variable levels of research. They generally publish annual reports, some of which, like the Kentucky Cancer Registry, have their data on the World Wide Web (http://www.kcr.uky.edu).
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NORTH AMERICAN ASSOCIATION OF CENTRAL CANCER REGISTRIES |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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As more states developed population-based registries, it became apparent that some standardization of central registry practices would be highly desirable, especially if data from different state registries were going to be exchanged, compared or aggregated. Consequently, the American Association of Central Cancer Registries was formed in 1987, later becoming the North American Association of Central Cancer Registries (NAACCR) with the addition of Canadian Central Cancer Registries. NAACCR’s mission ‘is to support and coordinate the development, enhancement and application of cancer registration techniques in population-based groups, so that quality data may be used for cancer control and epidemiological research, public health programs and patient care to reduce the burden of cancer in North America’ (4).
NAACCR establishes and maintains nationally accepted standards for the performance of central registries, trains and educates cancer registry professionals in central cancer registry operations, certifies central registries that achieve standards of high quality, promotes the use of cancer registry data in surveillance, cancer control and population-based research and annually aggregates data from population-based registries throughout the USA and Canada which meet standards of high quality in a publication known as Cancer in North America or CINA. Approximately 50% of US incident cases are reported in the latest volume of CINA (4).
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THE SURVEILLANCE, EPIDEMIOLOGY AND END RESULTS PROGRAM |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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The Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute (NCI) was developed under the 1971 National Cancer Act and began data collection in 1973. Its development followed national cancer surveys by the NCI in 1937, 1947 and 1969 and the annual collection of cancer survival data since 1956 by the NCI End Results Group from several state cancer registries and large hospital cancer registries in different parts of the country. Since its inception, the SEER Program has been the core element in the NCI Surveillance Research Program, providing a high-quality database which serves as the basis for a broad range of research activities and permits an assessment of the national progress in the fight against cancer (5).
The first four goals of the SEER Program have been to:
Determine the incidence of cancer in selected geographic areas of the United States with respect to demographic and social characteristics of the population and provide information relevant to the generalizability of the rates to the total US population. (The SEER database was never intended to cover the total US population, but rather to be a representative sample.)
Use data from the National Center for Health Statistics to provide cancer mortality rates for the total USA as well as by county and state.
Monitor trends in cancer incidence and mortality associated with specific forms of cancer with respect to geographic area and demographic, social, ethnic and biological characteristics of the population.
Monitor trends in cancer patient survival with respect to specific forms of cancer, extent of disease, demographic and socioeconomic variables of prognostic importance and patterns of care.
Currently, defined populations in SEER are covered through five state cancer registries and six metropolitan/regional registries, providing overall coverage of approximately 14% of the US population. Although recent reviews have indicated that its coverage should be expanded to include some populations not adequately represented, at this time SEER provides the best approximation of a national cancer database (5).
As noted in the most recent review of the Program, ‘SEER data increasingly are being used to answer questions about cancer causation, prevention, treatment and control. SEER and its predecessor programs have enabled the NCI to elucidate environmental carcinogens, to track the cancer-related effects of tobacco on men and women, to locate geographic areas with higher than average rates of cancer, to study patterns and outcomes of cancer care, to estimate the cost of cancer and to identify risk groups for research and public health intervention programs. All of this has been accomplished while maintaining the highest level of confidentiality and privacy’ (6). At the same time the SEER Program has maintained the highest standards of quality in the collection and analysis of cancer data and has set the pattern for all other central cancer registries in the country.
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NATIONAL PROGRAM OF CANCER REGISTRIES |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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During the 1980s, it became evident that although most states recognized the desirability of having an effective cancer registry, many lacked the financial support and personnel to gather complete, timely and accurate data on their populations and to insure that the data collected met minimum standards of quality. Ten states had no registry at the beginning of the decade and only eight states had authorizing legislation and enabling regulations in place for their registries’ operation. Most of the non-SEER states lacked the resources to insure that the data collected in their registries met minimum standards of operation.
In answer to the needs of the states, Congress established the National Program of Cancer Registries (NPCR) in 1992. Administered by the Centers for Disease Control and Prevention (CDC), the NPCR Program assists states and territories to develop new or enhance existing cancer registries and to meet standards for data completeness, timeliness and quality (established by NAACCR). The NPCR Program also assists states to train registry personnel and to establish computerized reporting and data-processing systems. At this time CDC provides some level of support for cancer registries in 45 states, three territories and the District of Columbia. It is hoped that within a few years all of the states will have comprehensive, high-quality cancer registries (1).
In addition to assisting states to achieve registries for use in developing effective cancer control programs, the NPCR Program has as its goal the development of a centralized, national cancer database in order to analyze accurately the US cancer burden on a national level. It is anticipated that ultimately data available from the 45 NPCR registries and the five SEER state registries will cover 97% of the US population. This will provide data for many research activities, but it is clear that state cancer registries and NPCR will have a more important role as critical ingredients in state, regional and national cancer control programs. Indeed, it seems unlikely that significant cancer control programs can be conducted or evaluated without the involvement of high-quality, population-based, central cancer registries (7).
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REFERENCES |
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TOPINTRODUCTIONHOSPITAL REGISTRIESPOPULATION-BASED REGISTRIESSTATE CANCER REGISTRIESNORTH AMERICAN ASSOCIATION OF...THE SURVEILLANCE, EPIDEMIOLOGY...NATIONAL PROGRAM OF CANCER...REFERENCES |
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1 Cancer Registries: The Foundation for Comprehensive Cancer Control. Centers for Disease Control and Prevention 1999, Atlanta, GA.
2 Austin DF. Types of registries: goals and objectives. In: Menck H, Smart C, editors. Central Cancer Registries: Design, Management and Use. Chur: Harwood 1994;1–11.
3 Foege WH, Hogan RC, Newton LH. Surveillance projects for selected diseases. Int J Epidemiol, 1976;5:29–37.
4 NAACCR Brochure. North American Association of Central Cancer Registries 1999, Springfield, IL.
5 Haynes MA, Smedley BD, editors. The Unequal Burden of Cancer: An Assessment of NIH Research Programs for Ethnic Minorities and the Medically Underserved. Washington: National Academy Press 1999.
6 Cancer Surveillance Research Implementation Plan. National Cancer Institute 1999, Bethesda, MD.
7 Friedell GH, Linville LH, Rubio A, Wagner WD, Tucker TC. What providers should know about community cancer control. Cancer Pract 1997;5:367–74.[ISI][Medline]
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