VII. Chronic Disease Prevention

FY 2000 Performance Plan - Revised Final FY 1999 Performance Plan

Cancer Registries

Cancer surveillance is the key to a unified scientific and public health approach to fighting cancer. Cancer surveillance includes ongoing, timely, and systematic collection and analysis of information on cancer deaths, new cancer cases, extent of disease, screening tests, treatment, and survival. Data collected through statewide cancer registries can be used to identify trends over time, to discover cancer patterns among various populations, and to show whether screening and other prevention measures are making a difference. This information is essential to states in directing effective cancer prevention and control efforts.

Despite the critical role registries can play in helping direct cancer prevention efforts, 10 States had no registry in 1990. Although the remaining 40 States had registries operating at some level, many lacked the financial support and the personnel to gather complete, timely, and accurate data on their population or to ensure that the data collected had minimum standards of quality. A number of states also lacked legal support for their registry's operation, which further hindered their ability to collect important information.

Through the National Program of Cancer Registries (NPCR), CDC funds states and territories to enhance existing cancer registries; plan and implement statewide registries where they do not exist; develop model legislation and regulations for states to enhance viability of registry operations; set standards for completeness, timeliness, and quality; and provide training. The NPCR serves as the foundation of a national, comprehensive prevention strategy; it is a basic tool in surveillance efforts that will provide the needed factual basis for appropriate policy decisions and allocations of scarce resources. Comprehensive, timely, and accurate data about cancer incidence and stage at diagnosis are needed to provide useful feedback for evaluating progress toward cancer control. In FY 1999, CDC will support 45 States, 3 territories, and the District of Columbia for cancer registries.

In strengthening the national network of cancer registries, CDC's National Program of Cancer Registries (NPCR) works closely with other federal agencies and with national organizations such as the American Cancer Society, the American College of Surgeons, the National Cancer Registrars Association, the National Cancer Institute (NCI), the North American Association of Central Cancer Registries (NAACCR), the College of American Pathologists, and other professional organizations. These organizations have formed a working consortium, the National Coordinating Council for Cancer Surveillance, to coordinate issues affecting cancer registration.

CDC and its partners also collaborate to develop successful strategies to capture cancer information on patients who are diagnosed and treated outside the hospital setting and to audit case completeness and quality in outpatient settings.

In addition, ongoing liaisons with the Department of Veterans Affairs, the Department of Defense, and American Indian/Alaska Native organizations encourage and facilitate voluntary reporting of cancer cases from federally supported facilities to state registries. CDC also collaborates with federal, state, and private organizations in designing, conducting, and analyzing surveillance research related to cancer. CDC assists states and national organizations in using cancer surveillance data to describe state or national disease burden, evaluate cancer control activities, and identify populations at high risk for certain cancers. Through collaboration with NAACCR, quality assurance activities are provided for the NPCR.

Because NPCR is a new program, many states do not yet collect information on all the cancer cases occurring in the state each year. However, collection of complete information is critical to the program. The outcomes expected for NPCR--the ability to monitor trends in cancer by site of the cancer, age and ethnicity of the patient, geographic region, and treatment outcomes--will not be possible until the central registries contain complete information. Thus, the performance measure proposed is the best available because it is the most critical to the eventual success and usefulness of the program.

Performance Goals and Measures

Performance Goal: Improve the assessment capacity of cancer prevention by enhancing existing cancer registries.

Performance Measure:

Verification/Validation of Performance Measures: States participating in the NPCR are expected to collect information on at least 95% of cancer cases diagnosed or treated in their state each year. Cancer cases should be reported to the central registry within 6 months of diagnosis, and funded states are required to incorporate the standards for data quality and format as described by NAACCR. CDC receives an annual administrative summary from each NPCR program, as well as quarterly reports that indicate progress towards reaching goals of completeness, timeliness, and quality of registry data. In addition, NPCR staff complete annual internal evaluations of program progress. Data from these evaluations are available in April each year. State cancer registries do not report raw data to the CDC, and CDC does not aggregate NPCR data at this time.

In 1994, 28 enhancement states and 9 planning states were funded through NPCR. Currently, NPCR provides support to 49 programs: 36 for enhancement of established central registries and 13 for planning and implementation of registries. Variations in states' capacities (planning or enhancement status) and initial year of funding result in differences across reference years used for calculating registry data completeness.

NAACCR has also established a process by which state registries can apply for certification that ensures that member registries are collecting useful and high-quality data. Member registries are evaluated yearly and provided confidential feedback.

Links to DHHS Strategic Plan

the DHHS Strategic Plan, Objective 5.1 states "Improve public health systems' capacity to monitor the health status and identify threats to the health of the nation's population." Data collected through statewide cancer registries can be used to identify trends over time, to discover cancer patterns among various populations, and to show whether screening and other prevention measures are making a difference. This information is essential to states in directing effective cancer prevention and control efforts.

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