National Program of Cancer Registries cancer surveillance system rationale and approach
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National Program of Cancer Registries cancer surveillance system rationale and approach

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      The Centers for Disease Control and Prevention (CDC) funds state and territorial health agencies to collect data on cancer. This document outlines the rationale and approach for receiving, assessing, enhancing, aggregating, and disseminating these cancer data from the states and territories funded by the CDC National Program of Cancer Registries (NPCR).

      Cancer is a devastating disease. In 1999, approximately 1.2 million new cancer cases will be diagnosed (excluding basal and squamous cell skin cancers) with an estimated 563,100 deaths of cancer. One of every four deaths in the United States is from cancer. CDC has the responsibility for public health surveillance and disease prevention in the United States. Cancer surveillance is an essential component of this responsibility. Timely dissemination of cancer surveillance data to public health agencies and scientists is key to designing and evaluating cancer prevention and control activities.

      Cancer registration is the fundamental method in the United States by which information is systematically collected about the incidence and types of cancer, the anatomic location, the extent of disease at the time of diagnosis, the kinds of treatment received by cancer patients, and the outcomes of treatment and clinical management. Within the United States, there are multiple national programs and organizations that actively collect and report data for cancer incidence, morbidity, mortality and survival. These data collected by each organization differ according to the mandates of the supporting agency. These national programs include the NPCR; the Surveillance, Epidemiology, and End Results (SEER) program; the North American Association of Central Cancer Registries (NAACCR); National Cancer Data Base (NCDB); and Central Brain Tumor Registry of the United States (CBTRUS).

      The CDC-funded NPCR is a population-based system of cancer registries established in 1992 by the Cancer Registries Amendment Act (Public Law 102-515). In Fiscal Year 1999, CDC supported 45 states, 3 territories, and the District of Columbia for central cancer registries through cooperative agreements— 36 for enhancing established registries and 13 for developing and implementing registries where none had been organized previously. When fully implemented, programs funded by NPCR will collect data on cancer for 96% of the U.S. population. CDC/NPCR implements its Congressional mandate by providing technical assistance and training to states in the establishment and operation of statewide registries, and by establishing and monitoring compliance with program standards for data completeness, timeliness, and quality.

      State-specific cancer registry data are reported and published by individual states, but are not currently reported to CDC. CDC is establishing an NPCR Cancer Surveillance System (NPCR–CSS) for receiving cancer incidence data annually from CDC-funded programs. NPCR will use this information to summarize and report cancer surveillance data that will be available to public health agencies, health advocacy groups and researchers. These enhanced data will allow CDC to generate state-specific data reports to the states for continuous quality improvement. The information from these assessments will identify areas (for the individual states and CDC) for education, targeted technical assistance and training.

      CDC's processing and aggregating of state cancer data provide cost-effective opportunities to enhance state data through linkages with other databases such as the National Death Index (NDI), U.S. Bureau of the Census data, geographic information systems, and Health Care Financing Administration/Medicare medical claims databases. These enhanced data will improve the utility and quality of cancer surveillance data at the state level.


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