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The reliable monitoring and surveillance of cancer is essential for the development of cancer control plans. Cancer registries fulfill this requirement by collecting cancer incidence data for defined populations, including information on patient and tumor characteristics at diagnosis (e.g. patient age, tumor type), and in some cases stage at diagnosis, type of treatment received, and outcome. Population-based cancer registries may cover an entire national population or a smaller region within a country, such as a province or county. Registry quality varies widely by geographic region; many countries in Latin America, Asia and Africa have poor quality or a complete absence of incidence data.

As with cancer registry data, there is wide international variation in the quality and completeness of death certificate information, with many countries in low- and medium-HDI regions having poor quality or a complete absence of vital registration.

Population-based cancer registries throughout the world are represented by the International Association of Cancer Registries (IACR), an organization founded in 1966 that provides opportunities for cancer registry personnel to meet, exchange information, and receive training. Approximately every five years, IACR collaborates with the International Agency for Research on Cancer (IARC) to publish Cancer Incidence in Five Continents (CI5), which contains cancer incidence data from the highest-quality registries worldwide. These registries represent a major source of information for GLOBOCAN, a summary of estimated cancer statistics from which most of the cancer maps in The Cancer Atlas are derived. In countries where no cancer registry data are available, or only very limited information from case series, incidence must be approximated from mortality information (where available) or from incidence in neighboring countries.

Cancer registry inclusion and population coverage in Cancer Incidence in Five Continents has grown exponentially since the first volume.

Number of countries, populations available for analysis, and cancer registries represented in Cancer Incidence in Five Continents

Download High Res Text alternative: Number of countries, populations available for analysis, and cancer registries represented in Cancer Incidence in Five Continents
Graph showing number of countries, populations available for analysis, and cancer registries represented in Cancer Incidence in Five Continents

Although there are significant disparities in cancer registry development, the number of high-quality cancer registries published in CI5 is increasing. Volume I, covering the early 1960s, had data from 31 cancer registries in 28 countries. The most recent volume (Volume X), covering 2003–07, has data from 290 registries in 68 countries. The multi-agency Global Initiative for Cancer Registry Development aims to bring about quantum changes in the availability of high-quality cancer registry data in these regions within the next decade.

Cancer death (or vital) registration data are also important for planning and monitoring cancer control programs. As with cancer registry data, there is wide international variation in the quality and completeness of death certificate information, with many countries in low- and medium-Human Development Index regions having poor quality or a complete absence of vital registration.

In many parts of the world, such as Latin America, Africa, and Asia, high-quality cancer incidence and mortality data are extremely lacking.

Proportion (%) of the regional population covered by high quality cancer registration and high quality complete vital registration of death

Download High Res Text alternative: Proportion of the regional population covered by high-quality cancer incidence and mortality data
Map depicting proportion (%) of the regional population covered by high quality cancer registration and high quality complete vital registration of death

“Population-based cancer registry data [are] an essential foundation of national cancer control planning – if you don’t know your cancer burden, how can scarce resources be targeted at the most appropriate solutions for cancer?”

Dr Eduardo Cazap (Argentina), Past President, Union for International Cancer Control