Supporting Cancer Registries for 20 Years

Before NPCR was established by the Cancer Registries Amendment Act in 1992, 10 states had no cancer registry, and most states with registries lacked the resources and legislative support they needed to gather complete data. Today, NPCR 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, NPCR and the National Cancer Institute's Surveillance, Epidemiology and End Results (SEER) Program collect data for the entire U.S. population. Since the program’s inception, information has been collected on more than 17 million cases of invasive cancer, including about 12,000 cases among children younger than 20 years. These data are published annually in the United States Cancer Statistics: Incidence and Mortality Web-based Report.

Cancer registries provide data used by researchers, clinicians, public health officials, legislators, community groups, and the public to understand cancer incidence (new cancer cases), survival, and mortality (death) rates across regions of the country. These data tell us where we stand in the effort to reduce the burden of cancer in the United States.

Additionally, data from SEER and NPCR registries can be used to look at cancer rates in specific populations (grouped by race and ethnicity, age, sex, and state), to identify health disparities in cancer diagnosis and treatment, and to watch cancer trends over time.

Data collected by state cancer registries help public health professionals understand and address the nation's cancer burden. Vital information about cancer cases and cancer deaths is necessary for health agencies to report on cancer trends, assess the impact of cancer prevention and control efforts, participate in research, and respond to reports of suspected increases in cancer occurrence.

Accomplishments

United States Cancer Statistics (USCS)
Since 2002, CDC and the National Cancer Institute have combined their data sources to publish annual federal cancer statistics in the United States Cancer Statistics: Incidence and Mortality Web-based Report. Produced in collaboration with the North American Association of Central Cancer Registries, this year's report includes cancer incidence data from registries covering 100% of the U.S. population, and mortality data from all states and the District of Columbia.

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. The Registry Plus™ suite consists of nine programs that may be customized for routine or special study data collection. CDC distributes these software programs, which are compliant with national standards, free of charge to the public health community.

Online Tools
The USCS data are available through several online tools—

• State Cancer Profiles is a dynamic Web tool that allows users to explore cancer statistics with interactive tables, graphics, and maps. These tools provide visual support for deciding where to focus cancer control efforts.
• CDC WONDER is an easy-to-use, menu-driven system that makes NPCR data available to public health professionals and the public. It is valuable in public health research, decision making, priority setting, program evaluation, and resource allocation.
• The National Environmental Public Health Tracking Network is a system of integrated health, exposure, and hazard information and data from a variety of national, state, and city sources. It adds to existing public health surveillance of cancer by examining potential ecological relationships with environmental exposures.

Addressing Risk Factors for Cancer

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—

• Cancers associated with excess weight and lack of sufficient physical activity.
• The uses of surveillance data for cancer prevention and control.
• Cancer in American Indians and Alaska Natives.
• Cancer among Hispanic/Latino populations in the United States.
• Implications of age and aging on the cancer burden in the United States.

Tobacco control. Collaborative efforts within CDC use NPCR data to identify and address many cancer risks. For example, cancer incidence data were paired with data on smoking prevalence and quit rates to assess progress in tobacco control in the article, "State-Specific Trends in Lung Cancer Incidence and Smoking—United States, 1999–2008."

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.

Success Stories

• Texas used surveillance data from the CDC-funded Texas Cancer Registry, part of the NPCR, to document the higher incidence of invasive breast cancer, inadequate access to mammography screening, and low breast cancer screening rates in six Dallas-Fort Worth area counties. In response, the Moncrief Cancer Institute will expand its Breast Cancer Screening and Patient Navigation program to increase access to breast cancer screening and diagnostic services in these counties.
• The Arkansas Central Cancer Registry used its data to help understand the burden of cancer among people with HIV/AIDS in Arkansas. Among all people with HIV/AIDS and cancer, the registry found that about 82% were male and 18% were female; about 60% were non-Hispanic white, 37% were non-Hispanic black, 2% were Hispanic, and 1% were of another race or ethnicity; and the most common kinds of cancer were non-Hodgkin lymphoma (23%), lung (12%), Kaposi's sarcoma (7%), oral cavity (6%), and Hodgkin lymphoma (6%). Understanding the burden of cancer among this special population is critical for targeting cancer screening, therapies, and follow-up care.