National Program of Cancer Registries

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

A National Prevention Strategy: Cancer Surveillance

The National Program of Cancer Registries (NPCR) serves as a fundamentaltool in surveillance efforts that will provide the needed factualbasis for appropriate policy decisions and allocation of scarceresources. Cancer surveillance refers to the ongoing, timely,and systematic collection and analyses of cancer incidence andmortality data crucial to the planning, implementation, and evaluationof public health practices.

The final link in the surveillance chain is the application ofthe data to prevention and control programs by evaluating programeffectiveness and planning for the future. Statewide cancer incidenceand mortality data can be used to identify trends, patterns, andvariations 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 aspart of a national disease prevention strategy," said USHealth and Human Services Secretary Donna E. Shalala. "Weknow that the burden of cancer for Americans varies widely bygeographic location and by ethnicity. A national system of cancerregistries can help us understand the disease better and use ourresources to the best effect in prevention and treatment."

How Will the Data Be Used?

• As the foundation of a national, comprehensive preventionstrategy.
• 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 CancerRegistries (Public Law 102-515, The Cancer Registries AmendmentAct). This legislation authorizes the Centers for Disease Controland Prevention (CDC) to provide funds to states and territoriesto enhance existing cancer registries; to plan and implement registrieswhere they do not exist; to develop model legislation and regulationsfor states to enhance viability of registry operations; to setstandards for completeness, timeliness, and quality; and to providetraining.

With fiscal year 1995 funds of $17.6 million, 42 states and theDistrict of Columbia are currently receiving CDC support for cancerregistries: 34 for enhancement of established registries and 9for 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 stateshad registries operating at some leve, but many lacked the financialsupport and the personnel to gather complete, timely, and accuratedata on 100% of their population or to ensure minimum standardsof quality. A number of states also lacked legal support for theiroperations, further hindering their ability to collect necessaryinformation.

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 betweenregions. The information to be collected will cover 100% of thestate's population.

Comprehensive, timely, and accurate data about cancer incidenceand stage at diagnosis are needed to provide useful feedback forevaluating progress toward cancer control in all 50 states andterritories. Such data have not been uniformly available at stateand local levels, although numerous cancer control programs havebeen initiated for breast, cervical, and skin cancers, among others.The data will also aid state health departments in conductingpopulation-based epidemiologic research.

• Computerized Data Collection--The NPCR sets the stage forstates to develop and implement a plan for statewide computerizeddata collection and electronic transmission of codes and textto the central registry. All facilities, such as hospitals, therapeuticradiation facilities, free-standing surgical centers, and pathologylaboratories, are required by state law or regulation to reportcancer cases. Hospitals are the reporting source for approximately95% of cases in a central registry. Computerized reporting fromhospitals will improve registry data quality by incorporatingstandard 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 expectedto 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, conductingcase-finding audits, and developing/maintaining written policiesand procedures.
• Standardized Systems--The NPCR requires each funded stateto implement the standards for data quality and format as describedby the North American Association of Central Cancer Registries(NAACCR) and endorsed by the CDC.
• Technical Assistance--The Division of Cancer Prevention andControl (DCPC) at the CDC plans, directs, and supports cancercontrol efforts through collaboration with prevention partnersin state health agencies; federal agencies; academic institutions;and national, voluntary, and private sector organizations.

DCPC will convene an annual meeting of funded registry statesfor information sharing, problem solving, and training. Site visitswill be scheduled as needed to assess program progress and mutuallyresolve problems. DCPC will also assist states and national organizationsin using cancer surveillance activities data to describe stateor national disease burdens, to evaluate cancer control activities,and to identify populations at high-risk of certain cancers. DCPCroutinely collaborates with federal, state, and private organizationson the design, implementation, and analysis of surveillance researchrelated 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-depthdata 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 monitorstrends in incidence, treatment, survival time, and the extentof disease.

The NPCR, when fully operational in all funded states, will collectincidence data on 93% of the US population, including the firstcourse of treatment and stage at diagnosis. The information canbe used to evaluate existing cancer screening programs and toanalyze cancer occurrence regionally, since cancer risk and environmentalexposures often cross state lines. The NPCR will provide informationto permit additional analyses on cancer as it relates to race/ethnicity.

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