Cancer registry: This registry collects information about the occurrence (incidence) of cancer, the types of cancers that occur and their locations within the body, the extent of cancer at the time of diagnosis (disease stage), and the kinds of treatment that patients receive. In the US, these data are reported to a central statewide registry from various medical facilities, including hospitals, physicians' offices, therapeutic radiation facilities, freestanding surgical centers, and pathology laboratories.
Data collected by state cancer registries enable public health professionals to better understand and address the cancer burden. Registry data are critical for targeting programs focused on risk-related behaviors (for example, tobacco use and exposure to the sun) or on environmental risk factors (for example, radiation and chemical exposures). Such information is also essential for identifying when and where cancer screening efforts should be enhanced and for monitoring the treatment provided to cancer patients. In addition, reliable registry data are fundamental to a variety of research efforts, including those aimed at evaluating the effectiveness of cancer prevention, control, or treatment programs.
State cancer registries in the US and comparable cancer registries in all countries are designed to:
- Monitor cancer trends over time.
- Determine cancer patterns in various populations.
- Guide planning and evaluation of cancer control programs (for example, determine whether prevention, screening, and treatment efforts are making a difference).
- Help set priorities for allocating health resources.
- Advance clinical, epidemiologic, and health services research.
- Provide information for a national database of cancer incidence.
In the US, the Centers for Disease Control and Prevention (CDC) has administered the National Program of Cancer Registries (NPCR) since 1994. This program is currently helping states and U.S. territories to:
- Improve their cancer registries.
- Meet standards for data completeness, timeliness, and quality.
- Use cancer data to support cancer prevention and control programs.
- Train registry personnel.
- Establish computerized reporting and data-processing systems.
- Develop laws and regulations that strengthen registry operations.
Before the NPCR was established, 10 states in the US had no cancer registry and most states with registries lacked the resources and legislative support needed to gather complete data. With fiscal year 2002 funding of approximately $40 million, CDC's NPCR supported central registries and promoted the use of registry data in 45 states, the District of Columbia, and the territories of Puerto Rico, the Republic of Palau, and the Virgin Islands. CDC also developed special research projects such as studies to examine patterns of cancer care in specific populations. CDC's goal is for all states to maintain registries that provide high-quality data on cancer and cancer care.
NPCR complements NCI's Surveillance, Epidemiology, and End Results (SEER) registry program. Together, NPCR and the SEER program collect cancer data for the entire U.S. population. The SEER program gathers in-depth data on cancer cases diagnosed in Connecticut, Hawaii, Iowa, New Mexico, and Utah, as well as in six metropolitan areas and several rural/special population areas. The six metropolitan SEER registries and some of the rural/special population registries submit data to NPCR's state registries. In 2001, SEER began providing additional support to four NPCR-supported state registries (California, Kentucky, Louisiana, and New Jersey).