What is the origin of the Cancer Registry?

Much of the research here was compiled by Mary Lou England, CTR for a presentation at the NCRA annual meeting in 1984 and is posted here with permission, 2010.

Data collection for disease indices dates back to the book of Leviticus. In these biblical writings, priests were directed to record all leprosy patients. The first cancer registry began in London in 1728, and the first known hospital devoted to cancer patients opened in France in 1740. One of the first recorded uses of cancer patient data was the work of Sir Percival Potts in 1775, identifying the cause of scrotal cancer in chimney sweeps. An example of mandatory reporting of cases of specific diseases occurred with the Factory act in 1885 in England and Wales. It made epitheliomas, which were caused by tar and other petroleum products, reportable.

General cancer morbidity data was first collected in Germany, where all physicians and hospitals began to report cancer statistics in 1904. The first nationwide registrations were made in Norway and Denmark shortly after the war. Zaragosa, Spain, initiated a population based registry in 1960.

In the United States, cancer registration was first attempted in a limited way in 1921 in the bone sarcoma registry of Dr. Ernest Codman. A major problem Dr. Codman experienced were differences in nomenclature and classification of disease. This lead to a joint effort by the American Society of Clinical Pathologists and the American College of Surgeons to develop a standard classification and nomenclature to be used by all physicians for cancer cases.

One of the first cancer hospitals in the United States was Memorial in New York, formerly called the New York Cancer hospital, which was established in 1884. Their cancer registry started in 1949 as a continuous program.

Researching hospital cancer registries, a number of programs were found to have starting dates prior to 1946. The earliest reference years were:

1926 Yale-New Haven Hospital, CT
1930 Hartford, CT, VA Hospital, Portland Oregon and the University of Nebraska Medical Center in Omaha
1933 University of Virginia Hospital at Charlottesville and 7 more in CT.
1935 Decatur Hospital, Decatur, GA
1936 Michigan University Hospital and the University of Southern California
1938 Iowa University Hospital

Between 1940 and 1946 there were many United States hospital registries started, with California leading the numbers. In 1956 the American College of Surgeons initiated a requirement to have a Cancer Registry as part of their approvals program for hospitals, thus causing an explosion of hospital-based registries. Many central registries – state and regional – were also developed during this time.

In 1927, Massachusetts became the first state to register cancer cases, followed by Connecticut in 1935. However, Connecticut has the distinction of being the oldest central registry in the United States based on a defined population group. The Connecticut Registry had 100% hospital participation. The Massachusetts registry became a population-based registry in 1959. Other early central and state registries were:

1936 Delaware
1945 Arkansas and Alabama. An interesting thing about the Alabama registry is that it was founded in part by cigarette tax.
1947 California (started with 9 hospitals)
1948 University of Iowa Hospitals and Clinics which expanded into a statewide registry.
1949 A pathology registry was established in Michigan that gradually enlarged into the Michigan Cancer Foundation Registry

In 1971 the National Cancer Act (aka The War on Cancer) budgeted money to the National Cancer Institute (NCI) for research, detection and treatment on cancer. Soon to follow the Surveillance, Epidemiology and End Results (SEER) Program of NCI established the first National Cancer Registry. In 1992, the National Program of Cancer Registries Act was passed to help states without registries to develop a cancer data system and to assist those state registries already in existence. In 1993 state laws emerged making cancer a reportable disease.

There is interest in cancer registries nation-wide because of the valuable data collected.
The cancer registry profession may not be one of the oldest professions, but our history spans many decades. Some of the registrars of today are the daughters and sons of our profession’s pioneers.