What is a Cancer Registry?

A cancer registry is a collection of statistics and data about cancer and its characteristics. Registries record cancer incidence and types, treatment options pursued, and death rates among other statistics. Information from individual doctors and hospitals typically is reported to a regional agency, which compiles the data through cancer registrars. Cancer registries sometimes are combined to create national databases as well. A cancer registry helps identify local and regional trends, provides a warning if an area is at risk for a particular form of the disease, and possibly aids in devising treatment plans.

Most cancer registries fit into three broad categories: individual health center information, regional data, and databases of a specific type of cancer. In the first category, treatment centers and hospitals keep internal records about the cancer cases treated there to establish local trends and often to decide how to spend research money. This information also is reported to a regional cancer registry which collects data for a defined geographic area as well as a database that tabulates specific forms of cancer. For example, a prostate cancer registry would show the disease’s incidence rate, the types of treatment used, and the success or failure of the therapies; it could also indicate show if a certain area is particular prone to prostate cancer.

While every cancer registry is different, most focus on collecting basic data about cancer incidence and types, location of tumors, patient medical histories, and treatment plans. Although personal medical facts are needed to build registries, identifying information is stripped from the records to ensure patient confidentiality. Doctors, hospitals, cancer centers, and research institutions all provide registry data. In some areas this is voluntary, but other jurisdictions have mandatory reporting.

A cancer registrar then compiles the reported data. Registrars, who are data management professionals, are tasked with overseeing the collection process to ensure reporting standards are met. They input the information into computer programs and identify and analyze any cancer trends seen. Registrars provide regular reports based on their findings to doctors and government officials. This process is part of medical informatics, a field that uses computers to collect, analyze, and act upon health information.

Registry statistics are used in different ways by medical and government officials. Physicians can use information collected to test whether certain treatments have better survival rates than others or whether specific types of cancer are diagnosed at late stages. Public health officials can identify if a precise form of cancer is endemic to a population or geographic area and investigate why. Government officials may use registries to craft education campaigns around a specific form of cancer; public service announcements reminding women to seek mammograms is one example. Registry information also may provide justification for allocating public health and research funds for certain types of cancers.