. "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.
of many ethnic minority and low-income white populations in the SEER program. Hispanics, for example, represent a diverse cultural group with varying places of origin. Including other states with significant Hispanic populations would increase the representativeness of this population in the registry, as the Hispanic population in SEER reside predominantly in California. The inclusion of border areas of Texas would improve Hispanic representation in the SEER program, as would areas of the northeast such as New York or New Jersey, both of which have significant Hispanic and Asian populations. Likewise, inclusion of tribes in Oklahoma and Montana would begin to address the diversity within the American Indian population and provide a more complete assessment of the cancer experience of this population. It is not expected that a national registry will compensate for small numbers if the population under study is small.
Expansion of the SEER program can be accomplished through existing mechanisms. Standards for data collection and reporting, and a uniform data set have been established by the North American Association of Central Cancer Registries (NAACCR) for use by all of its members, including both SEER and non-SEER population-based registries. Inclusion in the SEER program of selected state registries meeting these standards might be one means of facilitating expansion of SEER coverage to areas or populations not currently covered.
Recommendation 2-2a: To further enhance the excellent data provided in the SEER program database, adequate resources should be provided to expand SEER program coverage beyond the existing sites to include high-risk populations for which SEER program coverage is lacking. This expansion should address a wider range of demographic and social characteristics by using consistent nomenclature and a uniform data set and by reflecting the diverse characteristics of the current U.S. population.
In addition to the SEER program, the federal government assists in the support of the National Program of Cancer Registries (NPCR). These non-SEER program registries are currently funded by the individual states with additional financial and technical support from the CDC through the NPCR. Some of these registries are currently only collecting data concerning incidence, stage at diagnosis, and first course of treatment. The Veterans Administration Hospital system and others are also collecting information regarding course of disease, other treatment(s) and survival. Greater collaboration and coordination of data collection efforts among these registries will ultimately provide tremendous benefits in the form of a national cancer data set.
Currently, collaborative efforts among the five SEER registries and the