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  • Review Article
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The evolution of the population-based cancer registry

Nature Reviews Cancer volume 6, pages 603–612 (2006)Cite this article

Key Points

  • Population-based cancer registries (PBCRs) aim to identify all cases of cancer that occur in a defined population. A defined set of variables is recorded for each case; the minimum number is 10, but most registries have a more extensive dataset.

  • The basic role of PBCRs is to calculate the incidence of cancer at different sites, but most can provide more extensive information (for example, on tumour histology, stage at diagnosis, place and nature of treatment, and survival).

  • Incidence of cancer is synonymous with diagnosis, and the number of cases detected is influenced by diagnostic practices, especially with respect to screening. This must be considered when comparing incidence rates between populations and over time.

  • Cancer registries have been widely used in epidemiological research. Descriptive studies use the registry database to examine differences in the incidence (or survival) of cancer, according to variables associated with place (of residence, or of birth), time and personal characteristics (such as sex, ethnicity and social status). They are also widely used to follow up specific groups of individuals (cohorts) to detect the occurrence of new cases of cancer.

  • PBCRs are an essential component of a fully developed cancer-control programme. In addition to providing information on current and future needs for services, they are used to monitor programmes of prevention, early detection and cure (treatment).

  • PBCRs are becoming more widely involved in studies of the process of clinical care of cancer patients. Lack of clinical detail on cases is offset by the representative nature of the patients studied.

  • The first PBCRs were established over 60 years ago. Their numbers have increased progressively; In 1966, 32 registries reported their results in volume I of Cancer Incidence in Five Continents, and 40 years later, there were 449 members of the International Association of Cancer Registries covering 21% of the world population.

Abstract

The idea of recording information on all cancer cases in defined communities dates from the first half of the twentieth century, and there has been a steady growth in the number of such cancer registries since. Originally, they were concerned primarily with describing cancer patterns and trends. Later, many were able to follow up the registered patients and calculate survival. In the last 20 years the role of registries has expanded further to embrace the planning and evaluation of cancer control activities, and the care of individual cancer patients. This Review looks at the current status of cancer registration practice and use from an international perspective, mindful that the registration of cancer has expanded into a global activity.

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Figure 1: Cancer registry coverage; the geographic coverage (per cent of total population) of cancer registries by region.
Figure 2: Members of the European Network of Cancer Registres in July 2004.
Figure 3: Differences between incidence and mortality rates.
Figure 4: Survival from breast cancer in Europe.

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  1. Clinical Trials Service Unit & Epidemiological Studies Unit, University of Oxford, Richard Doll Building, Old Road Campus, Oxford, OX3 7LF, UK

    Donald M. Parkin

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DATABASES

National Cancer Institute

colon cancer

hepatocellular carcinoma

breast

prostate

FURTHER INFORMATION

Association of Nordic Cancer Registries

Australasian Association of Cancer Registries

Cancer Mondial

European Network of Cancer Registries

Groupe de Coordination pour l'epidemiologie et l’enregistrement du cancer dans les pays de Langue Latine

Gulf Center for Cancer Registration

International Association of Cancer Registries

North American Association of Central Cancer Registries

The Japanese Association of Cancer Registries

Glossary

Ecological study

A study in which the exposure to and outcome of disease are measured on populations or groups, rather than on individuals.

Disability-adjusted life years

(DALY) The years of life lost to premature death and years lived with a disability of specified severity and duration. One DALY is therefore one lost year of healthy life.

Comorbidity

The presence of coexisting or additional diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study. Comorbidity can affect both the ability of affected individuals to function and their survival; it can be used as a prognostic indicator for length of hospital stay, cost factors and outcome or survival.

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Parkin, D. The evolution of the population-based cancer registry. Nat Rev Cancer 6, 603–612 (2006). https://doi.org/10.1038/nrc1948

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