About the ProgramNational Program of Cancer Registries (NPCR)
Established by Congress through the Cancer Registries Amendment Act in 1992, and administered by CDC, the National Program of Cancer Registries (NPCR) collects data on cancer occurrence (including the type, extent, and location of the cancer) and the type of initial treatment.
Before NPCR was established, 10 states had no registry, and most states with registries lacked the resources and legislative support they needed to gather complete data. Today, through NPCR, CDC supports central cancer registries in 45 states, the District of Columbia, Puerto Rico, and the U.S. Pacific Island Jurisdictions. These data represent 96% of the U.S. population.
Together, CDC's NPCR and the National Cancer Institute's (NCI's) Surveillance, Epidemiology and End Results (SEER) Program collect data for the entire U.S. population. This national coverage enables researchers, clinicians, policy makers, public health professionals, and members of the public to monitor the burden of cancer, evaluate the success of programs, and identify additional needs for cancer prevention and control efforts at national, state, and more local levels.
Cancer Registries: Providing Quality Cancer Data
Public health professionals, researchers, the medical community, and policy makers need information about newly diagnosed cancer cases (called incidence) and deaths from cancer (called mortality) to understand and address the nation's cancer burden. Supported by CDC's NPCR or the NCI's SEER Program, cancer registries collect incidence data. CDC's National Center for Health Statistics' National Vital Statistics System collects mortality data.
Medical facilities such as hospitals, doctor's offices, and pathology laboratories send information about cancer cases to their cancer registry. Most information comes from hospitals, where highly trained cancer registrars transfer the information from the patient's medical record to the registry's computer software using standardized codes. The data are then sent to the central cancer registry.
Every year the central cancer registries electronically submit incidence, demographic, and clinical data to NPCR or SEER. None of the information submitted to CDC contains identifying information about individual patients.
The cancer registry data are used to—
- Monitor cancer trends over time.
- Show cancer patterns in various populations and identify high-risk groups.
- Guide planning and evaluation of cancer control programs.
- Help set priorities for allocating health resources.
- Advance clinical, epidemiologic, and health services research.
Software for Collecting and Processing Data
Since 1996, CDC has developed software programs to make the process of collecting and processing data easier for medical facilities and registries. CDC distributes these software programs, which are compliant with national standards, free of charge to the public health community.
Data Release Activities
One of NPCR's goals is to release these data to public health planners and others to monitor the burden of disease and to implement cancer prevention and control programs. Each year, a number of online products are updated to include the most recent year of data.
Addressing Cancer Burden and Risk Factors
CDC, often in collaboration with partners, uses the NPCR data to conduct epidemiologic studies on cancer burden and trends. Selected publications are listed below. You can search for other articles using NPCR data authored by researchers from CDC's Division of Cancer Prevention and Control using the Cancer Research Citation Search Tool.
Annual Report to the Nation
Since 1998, the CDC has collaborated with the National Cancer Institute, the North American Association of Central Cancer Registries, and the American Cancer Society to publish the Annual Report to the Nation on the Status of Cancer. Each year highlights a special topic, such as—
- Burden and trends in HPV-associated cancers and HPV vaccination coverage levels.
- Cancers associated with excess weight and lack of sufficient physical activity.
- Tumors of the brain and other nervous system.
- Colorectal cancer trends and impact of interventions to reduce future rates.
- Trends in lung cancer, tobacco use, and tobacco control.
Cancer Surveillance Research
To improve the quality of data in cancer registries and enhance the data’s usefulness, CDC has initiated many cancer surveillance research activities. Examples include—
- The Breast, Colon, and Prostate Cancer Data Quality and Patterns of Care Study used registry data on about 7,600 patients diagnosed in 1997 to describe the patterns of care that cancer patients received and their quality of treatment.
- The Breast and Prostate Cancer Data Quality and Patterns of Care Study examines the patterns of care that cancer patients receive and the quality of treatment-related data. The study is being conducted in collaboration with seven registries for about 24,000 patients diagnosed with female breast or prostate cancer in 2004.
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