. "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.
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researchers, serve as valuable resources in assessing the cancer burden among members of ethnic minority and medically underserved groups. The discussion in this section highlights some of the major information available and compares the findings to those of the SEER program when appropriate.
National Center for Health Statistics
NCHS collects all vital health statistics in the United States and has virtually complete data on all causes of death, including cancer. Using NCHS data, Frey et al., (1992) compared the rate of mortality from cancer among SEER programs registry participants to that among the total U.S. population and found that in most cases the SEER program provides an accurate picture of rates of mortality from cancer for the entire U.S. population. However, SEER program data failed to identify statistically significant trends in rates of mortality from cancer among ethnic minorities and in the rates of mortality from relatively rare cancers due to the small numbers of cases such types of cancer. For example, the SEER program failed to identify significant increases in mortality from cancers of the colon and rectum among African-American males.
The most disturbing highlight of this study was the lack of a consistent pattern of nonrepresentativeness of the SEER program data:
These results should be reviewed in the context of the underlying issue that motivated these analyses. In particular, the fact that SEER data are frequently used in lieu of national estimates for cancer incidence, survival, and in some cases mortality has created a need for a systematic understanding of the degree of representativeness in the SEER data. This need is especially acute insofar as the SEER data are used not just to provide a summary of experiences, but also to establish baselines and projections for future trends. (Frey et al., 1992, p. 876)
Future work in understanding the differences between the SEER program data and the actual data for the U.S. population may be used to adjust SEER program data to ensure that they accurately describe the national cancer burden.
State Tumor Registries
The National Program of Cancer Registries (NPCR) was established by the U.S. Congress in 1992 to enable states to enhance existing cancer registries or to establish new cancer registries through funding and technical assistance from the CDC (Centers for Disease Control and Prevention, 1998). At this time some states have excellent registries, but 10 states did