Cancer Registries

A cancer registry, also referred to as a tumor registry, is a cancer surveillance system that provides continued follow-up care on all cancer patients in a given location, hospital, or state. It is the chief method in the United States by which information is systematically collected about people diagnosed with cancer. Cancer registries document and store all significant elements of a patient's history and treatment. Depending on the resources available, the information may include basic demographic data such as age, sex, ethnicity, race, residence, and place of birth; date of diagnosis; date and cause of death; the type of cancer and its anatomical location; the extent of disease at the time of diagnosis; the types of treatment received; and the outcomes of treatment and clinical management. The information collected is then used to monitor cancer trends over time; to determine cancer patterns in various populations; to guide the planning and evaluation of cancer-control programs; to help set priorities for allocating health resources; to advance clinical, epidemiological, and health services research; and to provide information for a national database for cancer incidence.

The first modern registries for epidemiological purposes were created in the state of Connecticut in 1936. In Europe, registries were started in Denmark (1942), Belgium (1943), and the United Kingdom (1945). In 1940, New York passed the first law that required reporting of cancer cases diagnosed in the state and outside New York City to the state health department; the law was amended in 1973 to include all cancer cases in the state. Currently, most statebased cancer registries require reporting of cancer cases by state law. At present, population-based cancer registries exist in 45 states, the District of Columbia, and three U.S. territories (Puerto Rico, the Republic of Palau, and the Virgin Islands). All information reported to cancer registries is considered confidential, with strict procedures in place to protect the privacy of cancer patients.

Each time a patient is diagnosed with a new tumor, a report is sent to the state health department. When a person is diagnosed with more than one type of cancer, information is obtained for each separate tumor in a case report. Most registries include reports of all malignant cancers. Some types of cancers, including all skin cancers, and certain other types of basal cell and squamous cell carcinomas may not be reported because they are rarely fatal and usually do not require hospitalization. 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.

Because cancer surveillance is legally required and considered a major public health priority, cancer registry data are generally of high quality, relatively complete, and representative of the state's population. Some registries, especially in states that lack the resources to maintain them, are not timely in releasing information and may be incomplete. Most registries do not track clinical outcomes in reported cases.

Within the United States, there are multiple national organizations and programs actively collecting and reporting cancer data. These include the Centers for Disease Control's (CDC's) National Program of Cancer Registries (NPCR); the National Cancer Institute's Surveillance, Epidemiology, and End Results (SEER) program; the Commission on Cancer of the American College of Surgeons’ National Cancer Database; the Central Brain Tumor Registry of the United States; and the CDC's National Center for Health Statistics’ Vital Statistics Monthly Reports and data tapes. In addition, the American Cancer Society and two professional organizations, the National Cancer Registrars Association and the North American Association of Central Cancer Registries (NAACCR), disseminate cancerrelated information to the public and to professional communities.

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