Ten Years of Progress: The National Program of Cancer Registries

History

During 1991, breast cancer was the focus of much attention for countless women in the United States—their concerns swept through the media and the halls of Congress. Finding answers to many questions about breast cancer—and other cancers, as well—at the state and regional levels, however, remained virtually impossible, especially for the 10 states that had no central registry. Other obstacles facing state registries included the lack of financial and legal support or the personnel to collect complete, timely, and accurate data or to ensure that the data collected met minimum standards of quality.

In 1992, the Cancer Registries Amendment Act (Public Law 102-515) was passed—formally establishing the National Program of Cancer Registries (NPCR). Designing and improving the “cancer battle plan” gained a new strategic weapon.

Scope

In 2002, CDC marks the 10th Anniversary of the passage of Public Law 102-515 and the establishment of the National Program of Cancer Registries (NPCR). NPCR collects information on cancer cases from registries covering 96% of the nation’s population.

CDC’s NPCR complements the National Cancer Institute’s (NCI) Surveillance, Epidemiology, and End Results (SEER) program. Together, the NPCR and SEER programs collect data for the entire U.S. population.

CDC provides support and leadership to

• Help states and national organizations use cancer data to describe state, regional, and national disease burden, to evaluate cancer control activities, and to identify populations at high risk for certain cancers.
• Provide on-site technical assistance to registry personnel to help ensure data completeness, timeliness, and quality.
• Coordinate and convene meetings of registry personnel for information sharing, problem solving, and training.
• Collaborate with federal, state, and private organizations to design and conduct research using data collected through state registries and to analyze the findings.

Data collected by state cancer registries are used to help

• Determine cancer patterns among various populations.
• Monitor cancer trends over time.
• Guide planning and evaluation of cancer control programs.
• Help set priorities for allocating health resources.
• Advance clinical, epidemiologic, and health services research.

CDC is also developing special research studies to examine data quality in registries, the occurrence of cancer in underserved populations, and patterns of cancer patient care. CDC’s goal is for all states to establish registries that provide high-quality data on cancer that can be used for cancer prevention and control.

Purpose

The purpose of the NPCR is to help states and territories to

• Improve and enhance cancer registries.
• Meet standards for data completeness, timeliness, and quality.
• Develop model laws and regulations to strengthen registry operations.
• Train registry personnel.
• Establish a computerized reporting and data processing system for registries.
• Use cancer data to support cancer prevention and control programs.

Administered by the Centers for Disease Control and Prevention (CDC), the NPCR represents a pivotal step in the evolution of cancer surveillance and a unique opportunity to strengthen cancer reporting and registration in the United States.

Partnerships

In addition to providing financial and technical assistance to state cancer registries, CDC also participates in the National Coordinating Council for Cancer Surveillance, a consortium that includes the CDC, the American Cancer Society, the National Cancer Institute, the American College of Surgeons, the National Cancer Registrars Association, and the North American Association of Central Cancer Registries. The council provides a forum for these organizations to coordinate cancer surveillance activities in the United States. CDC also works with various private sector organizations, the Department of Veterans Affairs, the Indian Health Service, the Department of Defense, and other federal agencies to support cancer surveillance efforts.

Major Accomplishments

• Since 1994, the CDC has administered the NPCR, and now provides federal support for central, population-based registries in 45 states, the District of Columbia, and 3 territories (Puerto Rico, the Republic of Palau, and the Virgin Islands).



• Thirty-two programs are certified by the North American Association of Central Cancer Registries (NAACCR) as meeting completeness, timeliness, and quality standards for their 1999 data.



• In 2000, the CDC and the National Cancer Institute (NCI) signed a Memorandum of Understanding to formalize collaboration between the NCI’s surveillance activities and surveillance research programs and CDC’s NPCR.



• In 2000, CDC’s NPCR initiated the Cancer Surveillance System (CSS) for receiving, evaluating, and disseminating cancer data from programs funded by NPCR. In January 2001, NPCR registries respond to CDC's first Call For Data for the NPCR—CSS.



• In fall 2002, the CDC and the NCI plan to release their first joint report of official federal cancer incidence statistics from each state having high-quality data. The report is produced in collaboration with the North American Association of Central Cancer Registries (NAACCR).

More information about the program’s progress is available in the Cancer Registries: The Foundation for Cancer Prevention and Control Program Fact Sheet.