What is a cancer registrar? Cancer registrars are data information specialists that capture a complete history, diagnosis, treatment, and health status for every cancer patient in the U.S. Cancer registrars ensure that timely, accurate, and complete data are maintained on all types of cancer diagnosed and/or treated within a health care institution or within a defined population. The curated data provides essential information to researchers, healthcare providers, and public health officials to better monitor and advance cancer treatments, conduct research, and improve cancer prevention and screening programs.

What is a cancer registry? Cancer registries are information systems that manage and analyze data on cancer patients and survivors. Cancer registries can be classified into three general types: hospital registries, the starting point for cancer surveillance, maintain data on all patients. Cases are reported to the central or state cancer registry; central registries that maintain data on all cancer patients within certain geographical areas; and special purpose registries maintain data on a particular type of cancer, such as brain tumors. Together, CDC’s NPCR and NCI’s SEER Programs collect cancer data for 100% of the US population.

What information is included in the cancer registry? Cancer registrars collect a wide range of demographic and medical information: patient history (physical findings, screening information, occupation, and history of a previous cancer); diagnostic results; cancer information (primary site, cell type, stage of disease, biomarkers, and other prognostic indicators); treatment; and follow-up (recurrence and cancer status).

What is the history of cancer registries? In 1971, the National Cancer Act budgeted monies to the National Cancer Institute (NCI) for research, detection and treatment of cancer and, in 1973, the Surveillance, Epidemiology and End Results (SEER) Program of NCI established the first national cancer registry. In 1992, through the Cancer Registries Amendment Act, Congress established a National Program of Cancer Registries (NPCR). The legislation authorized the Centers for Disease Control and Prevention (CDC) to provide funds to states and territories to enhance existing cancer registries and to plan and implement registries.