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TOPIC: National Data Resources for Federal Registries Special Interest Group NATIONAL DATA RESOURCES SIG Fact Sheet A critical function of cancer registries is to use the data that they collect for education and research. Comparison between hospital cancer registry data and national, state or regional data can provide useful information. Several sources for national data are available through the internet. VACCR The Veterans Affairs Central Cancer Registry (VACCR) aggregates the data collected by the approximately 120 VA medical centers diagnosing and/or treating patients with cancer. The VACCR reference date for data collection and reporting is January 1, 1995. The VACCR website is only accessible through the VA intranet. (http://vaww1.va.gov/cancer/page.cfm?pg=16) DOD Department of Defense (DOD) central cancer registry website contains general information on military registries and military facilities. (http://www.afip.org/actur/index.html) National Cancer Institute Surveillance, Epidemiology and End Results (NCI-SEER) Summary Data The Cancer Statistics Review (CSR), available on the SEER web site (http://seer.cancer.gov/csr/), offers tables and graphs of data summaries including trends over time for cancer incidence, mortality, survival, prevalence, and lifetime risk statistics. The latest edition includes statistics from 1975 through 2002, the most recent year for which data are available. Data can be accessed by age, race/ethnicity, or type of cancer. Information can be retrieved easily by cancer site (chapter) or through a search feature. SEER Interactive Data Query Systems Fast Stats is a web system for easy, rapid access to key SEER and U.S. cancer statistics for most cancer sites (http://seer.cancer.gov/faststats/). Data may be selected by age group, sex, race, and years of diagnosis. Incidence is the default statistic displayed, but survival, prevalence, and lifetime risk of developing specific cancers are also available. The statistics are also available as text-only files. The Cancer Query System (CANQUES) is an alternative web-based application allowing users to generate statistics from SEER data (http://seer.cancer.gov/canques/). CANQUES offers more flexibility than Fast Stats, allowing users to select the type of statistics and variables and to output the statistics in formats usable by other software. United States Cancer Statistics SEER and NPCR collaborate, along with NAACCR, on the United States Cancer Statistics (http://www.cdc.gov/cancer/npcr/uscs/index.htm), an annual publication that combines incidence data collected by SEER and NPCR and mortality collected by the National Center for Health Statistics (NHCS) (http://www.cdc.gov/nchs/). The combined data cover cancer incidence in 93 percent of the U.S. population and mortality in 100 percent. It does not contain survival data or trends over time. This publication is available in print and on the internet. 1 CDC WONDER An expanded version of the USCS dataset is available on the CDC web site in WONDER (http://wonder.cdc.gov/cancer.html), an online data query system that allows users to generate reports with age-adjusted rates, crude rates, and case counts by state, large metropolitan statistical areas, year of diagnosis, sex, race, and age using both adult and childhood classifications of cancer. At present NPCR is not making public use data files available to individual researchers, although there are plans to do this in the future. Cancer State Profiles Cancer State Profiles (http://statecancerprofiles.cancer.gov/), a web-based, interactive system of maps and graphs, enables the investigation of cancer trends at national, state and local levels. It is a joint effort of the NCI and the CDC allowing easy retrieval of data characterizing the cancer burden in individual states. A primary focus is to make data available for policy makers and health planners, and to inform cancer control programs. Annual Report to the Nation on the Status of Cancer The Annual Report to the Nation on the Status of Cancer (www.seer.cancer.gov/report_to_nation/), a collaboration of the National Cancer Institute, the American Cancer Society, the Centers for Disease Control and Prevention, and the North American Association of Central Cancer Registries provides an update of U.S. cancer death rates, incidence rates and trends. Each report interprets the data and has a section concentrating on a specific area of cancer trends. The current report analyzes population-based trends in cancer treatment. Cancer Facts & Figures American Cancer Society (ACS) on their Cancer Facts & Figures publication (http://www.cancer.org/docroot/stt/stt_0.asp ). Statistical methods for projecting cancer incidence at future times developed by the SEER Program are currently being employed by the ACS. Spatial models will also be used starting in 2007 to provide more accurate incidence estimates for various geographic areas. NAACCR CINA+ Online (www.naaccr.org/cinap/index.htm) provides a flexible interactive query system for access to incidence data on all cancer sites for the United States and Canada. Individual stateand province-specific data from high quality registries may be output in custom designed tables, charts (multi-line graphs, pie charts, or bar graphs), and maps. Updated 04/06 * * * These Survey Results are brought to you by National Cancer Registrars Association (NCRA), a non-profit, professional organization with nearly 4,000 members representing the various types of institutions that have an interest and responsibility in cancer services and data. NCRA promotes education, credentialing, and advocacy for Cancer Registry professionals. More information on NCRA’s Special Interest Groups can be found on NCRA’s website at: http://www.ncra-usa.org/ . National Cancer Registrars Association 1340 Braddock Place, Suite 203, Alexandria, Virginia 22314 Tel (703) 299-6640 Fax (703) 299-6620 Email <[email protected]> 2