45 non-SEER state registries are effectively facilitated by the NAACCR. Each of these registries has accepted NAACCR's comprehensive three-volume Standards for Data Exchange Records, Data Variable Definitions, and Completeness, Quality, and Timeliness of central registry operations. In addition, several NAACCR committees dealing with uniform data standards, data exchange, publication, certification, education, and other important issues include members from SEER, as well as from CDC and from state registries. NCI also offers significant leadership support to NAACCR, as Dr. Brenda Edwards of SEER serves as Secretary of the organization and sits on the Board of Directors. In addition, data from all SEER and non-SEER state registries are currently aggregated and published by NAACCR. Continued support for this activity should be assured.
In addition to these efforts, the National Coordinating Council for Cancer Surveillance (NCCCS), which was organized in 1995 and is currently comprised of representatives from SEER, CDC, NAACCR, NCHS, the American Cancer Society, the American College of Surgeons, and the National Cancer Registrars Association is also working to facilitate collaboration among the several surveillance agencies. As noted above, NCI should continue to support NCCCS activities.
Recommendation 2-2b: NCI should continue to work with the North American Association of Central Cancer Registries and other organizations to expand the coverage and enhance the quality of the 45 non-SEER program state cancer registries with the intent of ultimately achieving—together with the SEER program state registries—two goals: (1) a truly national data set through a system of longitudinal population-based cancer registries covering the entire country, and (2) a reliable database for each state to serve as the basis for both the development and evaluation of cancer control efforts in that state.
As discussed earlier in this chapter, medically underserved populations may be defined in many ways, including on the basis of income, insurance status, access to cancer services, or some combination of factors, such as those related to SES. The committee urges NCI to establish a consistent definition, and regularly report cancer surveillance data related to this population.
It is important that studies be undertaken to clarify whether differences in the burden of cancer are due to "racial-ethnic" or to socioeconomic factors, and the data collected on the medically underserved could help to resolve this issue. Because of the large overlap between medically underserved