National Program of Cancer Registries

The American Cancer Society (ACS) estimates that more than 8 million Americans alive today have a history of cancer, of whom 5 million were diagnosed 5 or more years ago. Most of these 5 million can be considered cured, while others still have evidence of cancer. In 1995, about 1,252,000 new cancer cases were diagnosed. This estimate does not include basal and squamous cell skin cancers and in situ carcinomas except bladder. The annual incidence of these skin cancers is estimated to be more than 800,000 cases. There has been a steady rise in cancer mortality in the United States in the last half-century. In 1995, about 547,000 people died of cancer--more than 1,500 people a day. One out of every five deaths in the United States is from cancer.

A National Prevention Strategy: Cancer Surveillance

The National Program of Cancer Registries (NPCR) serves as a fundamental tool in surveillance efforts that will provide the needed factual basis for appropriate policy decisions and allocation of scarce resources. Cancer surveillance refers to the ongoing, timely, and systematic collection and analyses of cancer incidence and mortality data crucial to the planning, implementation, and evaluation of public health practices.

The final link in the surveillance chain is the application of the data to prevention and control programs by evaluating program effectiveness and planning for the future. Statewide cancer incidence and mortality data can be used to identify trends, patterns, and variations for directing cancer control efforts; conducting research; and designing programs to reach medically underserved populations.

"The goal of this program is to reduce cancer mortality as part of a national disease prevention strategy," said US Health and Human Services Secretary Donna E. Shalala. "We know that the burden of cancer for Americans varies widely by geographic location and by ethnicity. A national system of cancer registries can help us understand the disease better and use our resources to the best effect in prevention and treatment."

How Will the Data Be Used?

• As the foundation of a national, comprehensive prevention strategy.
• To monitor trends in cancer incidence and mortality.
• To guide cancer control program planning and evaluation.
• To prioritize health resource allocations.
• As a source for population-based epidemiologic research.

The Cancer Registries Amendment Act

In October 1992, Congress established a National Program of Cancer Registries (Public Law 102-515, The Cancer Registries Amendment Act). This legislation authorizes the Centers for Disease Control and Prevention (CDC) to provide funds to states and territories to enhance existing cancer registries; to plan and implement registries where they do not exist; to develop model legislation and regulations for states to enhance viability of registry operations; to set standards for completeness, timeliness, and quality; and to provide training.

With fiscal year 1995 funds of $17.6 million, 42 states and the District of Columbia are currently receiving CDC support for cancer registries: 34 for enhancement of established registries and 9 for developing registries where they do not currently exist.

Previous Status of State Registries

Prior to the NPCR, 10 states had no existing registry and 40 states had registries operating at some leve, but many lacked the financial support and the personnel to gather complete, timely, and accurate data on 100% of their population or to ensure minimum standards of quality. A number of states also lacked legal support for their operations, further hindering their ability to collect necessary information.

NPCR Priorities

• Timely and complete Reporting --The NPCR enables complete, timely, and standarized reporting of cancer data by age, ethnicity, and geographic region--within a state, between states, and between regions. The information to be collected will cover 100% of the state's population.

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 all 50 states and territories. Such data have not been uniformly available at state and local levels, although numerous cancer control programs have been initiated for breast, cervical, and skin cancers, among others. The data will also aid state health departments in conducting population-based epidemiologic research.

• Computerized Data Collection--The NPCR sets the stage for states to develop and implement a plan for statewide computerized data collection and electronic transmission of codes and text to the central registry. All facilities, such as hospitals, therapeutic radiation facilities, free-standing surgical centers, and pathology laboratories, are required by state law or regulation to report cancer cases. Hospitals are the reporting source for approximately 95% of cases in a central registry. Computerized reporting from hospitals will improve registry data quality by incorporating standard edits that can be applied to the data prior to submission. This approach allows for resolution of problems at the data source.
• Quality Assurance--All central cancer registries are expected to have a section or unit responsible for quality assurance activities, such as editing and reviewing data, linking and matching cases, training state personnel and hospital cancer registrars, conducting case-finding audits, and developing/maintaining written policies and procedures.
• Standardized Systems--The NPCR requires each funded state to implement the standards for data quality and format as described by the North American Association of Central Cancer Registries (NAACCR) and endorsed by the CDC.
• Technical Assistance--The Division of Cancer Prevention and Control (DCPC) at the CDC plans, directs, and supports cancer control efforts through collaboration with prevention partners in state health agencies; federal agencies; academic institutions; and national, voluntary, and private sector organizations.

DCPC will convene an annual meeting of funded registry states for information sharing, problem solving, and training. Site visits will be scheduled as needed to assess program progress and mutually resolve problems. DCPC will also assist states and national organizations in using cancer surveillance activities data to describe state or national disease burdens, to evaluate cancer control activities, and to identify populations at high-risk of certain cancers. DCPC routinely collaborates with federal, state, and private organizations on the design, implementation, and analysis of surveillance research related to cancer.

How Does the NPCR Complement Existing Cancer Registries?

NPCPR-funded central registries will complement existing registries, such as the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) program. The SEER program gathers in-depth data on a sample of the population in five states (Connecticut,

Hawaii, Iowa, New Mexico, Utah) and six metropolitan areas (Atlanta, Detroit, Los Angeles, San Francisco/Oakland, San Jose/Monterey, Seattle), covering about 14% of the US population. It monitors trends in incidence, treatment, survival time, and the extent of disease.

The NPCR, when fully operational in all funded states, will collect incidence data on 93% of the US population, including the first course of treatment and stage at diagnosis. The information can be used to evaluate existing cancer screening programs and to analyze cancer occurrence regionally, since cancer risk and environmental exposures often cross state lines. The NPCR will provide information to permit additional analyses on cancer as it relates to race/ethnicity.

The CDC works closely with other federal agencies and with national organizations, such as the NAACCR, the American College of Surgeons, the National Cancer Registrars' Association, the American Cancer Society, and other professional organizations to ensure coordination of efforts.