. "2 The Burden of Cancer Among Ethnic Minority and the Medically Underserved Populations." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
The following HTML text is provided to enhance online
readability. Many aspects of typography translate only awkwardly to HTML.
Please use the page image
as the authoritative form to ensure accuracy.
not begin registries until 1990 and half the states have had one for less than 10 years. Most of these registries currently collect and report incidence, tumor diagnosis and stage, and first course of treatment, but several have become or are becoming longitudinal registries collecting follow-up information regarding subsequent treatment and survival.
These registries complement and cooperate with other national databases, primarily through the North American Association of Central Cancer Registries (NAACCR). Sponsoring members of NAACCR include NCI, CDC, the American Cancer Society, the American College of Surgeons, the American Joint Committee on Cancer, Laboratory Centre for Disease Control Health Canada, Statistics Canada, and the National Cancer Registrars Association. Dr. Brenda Edwards of NCI serves as permanent Secretary and as an ex-officio member of the Board of Directors of NAACCR. All SEER program registries and all other central cancer registries in the U.S. are members of NAACCR. Cancer statistics from the non-SEER program state cancer registries are published annually by NAACCR together with those of the five SEER program-supported state registries. This is the closest approximation to a national cancer registry report available in the United States. Published data, however, are limited to only African American and white racial classifications, and no survival data are included in these reports. The usefulness of this aggregate information from NAACCR is limited, but this database—including information from both the SEER program and NPCR-supported state registries—will become increasingly useful as more state registries improve the completeness and quality of their data collection and analysis.
Through a separate activity NAACCR is now responsible on a voluntary basis for quality assurance review of state supported cancer registries. After extensive consideration, NAACCR has established an annual program of certification based on the completeness, timeliness, and quality of data collection and reporting. In its first year of operation 36 U.S. and Canadian registries, including all SEER program registries, applied for certification. Twenty-seven were awarded certificates. Every registry is encouraged to submit data annually for review. The intent of NAACCR and NPCR is to have all state-funded (and SEER program) registries be certified annually by NAACCR. All registries are also encouraged to become longitudinal registries in time. When that happens, a truly national picture of cancer incidence, mortality, and survival will be available in the U.S.
Data collected by state cancer registries highlight some important regional differences in cancer rates that are not ascertained by the SEER program and illustrate the need to have state-specific data in order to develop and evaluate cancer control programs in each state. SEER data cannot be used for this purpose, except for the states included in the