Summary

Cancer incidence rates are rising globally, with new cases predicted to increase by almost 50% by 2040.1 Population-based cancer registries are the gold standard for collection of cancer incidence data, but only 15% of the global population is covered by them.2 3 In 2011, the International Agency for Research on Cancer launched the Global Initiative for Cancer Registry Development (GICR) to support low- and middle-income countries and regions to set up their own population-based cancer registries.4 This involved an initial site assessment that then led to the provision of training, directed support, networking opportunities and cancer control planning.5 6 The GICR was expanded in 2020 to include the ChildGICR – an initiative to develop implementation strategies and evidence-based standards, and to build capacity for childhood cancer registration.7

Challenge

Cancer incidence rates are rising worldwide; by 2040, new cases are expected to have increased by almost 50% globally.1 Cases in Africa, Latin America and the Caribbean, and Asia are due to rise by 89%, 65% and 59% respectively.1

The collection of cancer incidence and mortality data enables policymakers to identify target populations, and to implement policies to reduce the burden of the disease.8 The most effective collection mode for cancer incidence data is through population-based cancer registries (PBCRs).5 PBCRs are ongoing surveillance systems that monitor new cancer cases and mortality within a defined population.9 For PBCRs to be effective at influencing policy, the data collected needs to be complete, valid and follow international standards of disease classification.9 10

Only 15% of the world’s population is covered by PBCRs, and different regions have varying levels of coverage.2 3 Almost 100% of North America falls within a PBCR, in comparison with 8%, 7% and 1% Latin America and the Caribbean, Asia and Africa respectively.11 Low- and middle-income countries are under-represented in cancer incidence data, but they are due to experience the greatest increase in disease burden over the next 20 years.1 To help mitigate this, it is imperative that high-quality PBCRs are established to ensure effective policies can be implemented.

Solution

In 2011, the International Agency for Research on Cancer (IARC) launched the Global Initiative for Cancer Registry Development (GICR).4 This initiative was set up to provide low- and middle-income countries and regions capacity-building support in cancer surveillance, to enable the establishment of PBCRs.8 Interested countries and regions receive site visits from the IARC, who assesses all aspects of local cancer registration  Recommendations from these visits are the basis of further GICR guidance, alongside formal agreements on the long-term commitment between registry stakeholders and IARC.5

The GICR is coordinated across six IARC regional hubs in Africa, Latin America and the Caribbean, Asia and the Pacific Islands. These hubs work to strengthen the quality of cancer data and their use in cancer control.12 Once countries and regions have undergone their initial assessment, they receive tailored support from the regional hubs, which provide:5 6

  • Training – each hub provides annual, tailored courses on cancer registration; ad hoc training for region-specific registry requirements; and reference materials.
  • Directed support – each hub provides technical support for PBCR methods, coding and classification, data management, quality control and assurance, data analysis, and agency liaison.
  • Cancer control – the hubs are responsible for the dissemination of data to inform research and cancer control planning.
  • Networking – the hubs assist in the development of regional networks and communication between registries to ensure the longevity of PBCRs.

What has been achieved?

Since the inception of the GICR, 36 countries have received site visits to assess the status of cancer registration and the potential for change.13 The IARC regional hubs have delivered over 20 tailored courses, training over 400 registry staff.13

The GICR was expanded in 2020 to include the ChildGICR. This aims to support the World Health Organization’s Global Initiative for Childhood Cancer – an initiative that aims to achieve a 60% survival rate in children with cancer by 2023.7 This expansion of the GICR aims to develop implementation strategies, capacity building and evidence-based standards for childhood cancer registration, particularly in low- and middle-income countries.7

Next steps

The IARC plans to evaluate the GICR and regional hubs are to assess progress and make recommendations on which areas to improve.14 Assessment will use five key performance indicators:14

  1. The number of initial site visits
  2. The number of countries these are across
  3. The number of regional training courses held
  4. The number of collaborative research agreements,
  5. The number of peer-reviewed articles published.

References:

  1. International Agency for Research on Cancer. 2023. Cancer tomorrow: Estimated number of new cases from 2020 to 2040, Both sexes, age [0-85+] Available here: https://gco.iarc.fr/tomorrow/en/dataviz/bars [accessed: October 2023]
  2. International Agency for Research on Cancer. 2023. The value of cancer data. Available here: https://gicr.iarc.fr/about-the-gicr/the-value-of-cancer-data/ [accessed: October 2023]
  3. International Cancer Control Partnership. 2023. Cancer registries. Available here: https://www.iccp-portal.org/cancer-registries [accessed: October 2023]
  4. International Agency for Research on Cancer. 2021. About the GICR. Available here: https://gicr.iarc.fr/about-the-gicr/ [accessed: October 2023]
  5. Piñeros M, Abriata MG, de Vries E, et al. 2021. Progress, challenges and ways forward supporting cancer surveillance in Latin America. International Journal of Cancer 149(1): 12-20 6. [accessed: October 2023]
  6. International Agency for Research on Cancer. 2023. Core Hub Functions. Available here: https://gicr.iarc.fr/iarc-regional-hubs-for-cancer-registration/core-hub-functions/ [accessed: October 2023]
  7. World Health Organization. 2023. WHO Global Initiative for Childhood Cancer on the path to bridging the Survival Gap and attaining Universal Health Coverage: a 5-Year Review. Geneva, Switzerland: World Health Organization [accessed: October 2023]
  8. Mery L, Bray F. 2020. Population-based cancer registries: a gateway to improved surveillance of non-communicable diseases. Ecancermedicalscience 14: ed95 [accessed: October 2023]
  9. Piñeros M, Znaor A, Mery L, et al. 2017. A Global Cancer Surveillance Framework Within Noncommunicable Disease Surveillance: Making the Case for Population-Based Cancer Registries. Epidemiologic Reviews 39(1): 161-69 [accessed: October 2023]
  10. Bray F, Znaor A, Cueva P, et al. 2014. Planning and Developing Population-Based Cancer Registration in Low- or Middle-Income Settings. Lyon, France: International Agency for Research on Cancer [accessed: October 2023]
  11. Bray F, Colombet M, Mery L, et al. 2021. Cancer Incidence in Five Continents, Vol. XI. Lyon, France: International Agency for Research on Cancer [accessed: October 2023]
  12. International Agency for Research on Cancer. 2023. IARC Regional Hubs. Available here: https://gicr.iarc.fr/iarc-regional-hubs-for-cancer-registration/ [accessed: October 2023]
  13. Union for International Cancer Control. 2023. Global Initiative for Cancer Registries (GICR). Available here: https://www.uicc.org/what-we-do/sharing-knowledge/global-initiative-cancer-registries-gicr [accessed: October 2023]
  14. International Agency for Research on Cancer. 2023. Results and Evidence. Available here: https://gicr.iarc.fr/results-and-evidence/ [accessed: October 2023]