Chapter 99

High quality cancer registries are critical for any modern health care system. They provide organizations and governments with vital data for allocating public health resources in an efficient manner. They enable investigators to study cancer at both patient and population-based levels, and allow clinicians to develop optimal methods for the prevention, diagnosis, and treatment of disease. Tumor registries facilitate important comparisons between different regions, races, genders, and age groups. When a registry has been operating for many years, survival and other prognostic data become available. Trends can also be followed, which allows public health experts to project future incidence rates and predict the need for screening programs, treatment programs, and new facilities.

In the United States and elsewhere, there are 2 main types of tumor registries. Population-based registries include national, regional, or state databases that provide data on the general population. Their purpose is to capture incidence, prevalence, survival, and mortality data for all new cancer cases in a defined population.1 Hospital-based registries, on the other hand, provide data that characterize cancer care at the institutional level. This allows researchers to study specific treatment protocols and provides insight into the practice patterns at different hospitals.

One of the first organized attempts to systematically collect cancer data occurred in 1900 when the Prussian Ministry of Culture sent questionnaires to every physician in Germany. The goal of the survey was to document the total number of cancer cases, but due to a poor response rate it was regarded as a failure.1 A similar problem was also experienced in Massachusetts in the 1920s after surveys aimed at identifying cancer cases were largely disregarded by practitioners.2 In 1935, the Connecticut State Department of Health established one of the first cancer research divisions in the United States. Six years later, the Connecticut Tumor Registry was created, which subsequently became one of the first successful American tumor registries.3 To date, over 400 reports have been published with information from this state database.4

In 1942, Denmark established the first national cancer registry, the Danish Cancer Registry. In this system, Danish physicians reported cases on a volunteer basis and were given access to mortality and death certificate data.5 The World Health Organization followed Denmark's lead in 1950 with the development of the first set of cancer registration guidelines.6 The International Union Against Cancer also created the Committee on Geographic Pathology, which emphasized the importance of recording all new cancer cases within a defined geographic population.7 With the information obtained from these initial efforts, the first volume of Cancer Incidence in Five Continents was published in 1966. The International Association of Cancer Registries (IACR) was founded later that year.8 The IACR currently serves as the membership organization for population-based registries worldwide and has set the standards for cancer registration and training for over 40 years.9

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