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.