Brief History of Cancer Registration

The idea of using a written, catalogued registry of man's afflictions in order to understand them better dates back to at least the late 16th century. Prompted by the seemingly random geographic ravages of the plague, the English Crown appointed elderly, epidemic-scarred women to prowl the countryside in search of the dead and dying. These 'Ancient Matrons' published weekly 'Bills of Mortality' for each parish, tabulating deaths by causes such as 'the purples' (probably leukemia), 'riting of the lights', 'consumption' (often an effect of cancer), and of course, the plague. How this information was used is not recorded. Perhaps the royalty found it helpful to determine where the plague was active so they could be somewhere else.

Around 1665 a London businessman, John Graunt, created medical history by subjecting decades of mortality data to critical and mathematical analysis. He literally invented the science of medical epidemiology and statistics, publishing a pamphlet with 108 conclusions. The list included such revolutionary observations as the facts that women saw physicians twice as often as men yet lived longer, and plague epidemics moved outward from swampy areas. Graunt also was the first person to use mortality statistics to project population survival, probably by crudely fitting data samples to a logarithmic curve. For his efforts John Graunt became the first non-scientist appointed to the Royal Academy.

A few years later Sir Edmund Halley, of comet fame, used Graunt's inspiration to create the first actuarial tables for an emerging French life insurance industry. The "life table" concept is now the backbone of the cancer outcomes analysis.

The first modern case registries for the study of cancer emerged in the early 1900's as individual physician or institutional projects in the United States or Europe. In 1956 the American College of Surgeons (ACoS) formally adopted a policy to encourage, through their Approvals Program, the development of hospital-based cancer registries. It was believed that by periodically reviewing the results of cancer treatment regimens, the hospitals and physicians might reveal weaknesses in local patterns of care that would offer opportunities for improvement and ultimately develop a better understanding of the disease and its treatment. Early hospital registries tended to be inaccessible and consisted of unused card files of data. The most valuable information came from large central registry systems such as the NCI SEER program.

The advent of microcomputer registry systems in the 1980's created a new window of opportunity for making registry information work to the patient's benefit and improve its accessibility. Standardization of data collection has made it possible to pool data from multiple registries in such projects as the National Cancer Data Base (NCDB) of the Commission on Cancer (CoC - a division of American College of Surgeons). The NCDB receives deidentified data from hospitals/facilities accredited by the ACoS, CoC. Through the work of the NCDB staff and others, a new view of community patterns of care and outcomes that often challenge the classic medical literature emerge. There is now a more global standardization of registry data collection and reporting that has a profound effect on the management and outcome of cancer.

To find out more about the history of the cancer registry, take a look at this brief list of events related to cancer registry and registration.

Updated: December 11, 2023