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IARC 60th Anniversary - 19-21 May 2026

Session : Cancer Surveillance in the 21st century

Developing a Legal Framework for Population-Based Cancer Registries: A Toolkit for Global Adaptation

JONES H. 1, ROSALES M. 1, KITONYO-DEVOTSU R. 1

1 McCabe Centre for Law and Cancer, East Melbourne, Australia

Background
Population-based cancer registries (PBCRs) are critical for generating reliable data on cancer incidence and survival, which underpin national cancer control strategies. Despite their importance, many jurisdictions lack a clear legal mandate for mandatory reporting of cancer diagnoses, resulting in incomplete data and policy impact. Strengthening legal frameworks is essential to ensure systematic data collection and compliance with international best practices, ultimately helping to identify and address global cancer inequities.

Objectives
This initiative aimed to develop a practical toolkit to guide countries in establishing a legal basis for mandatory cancer reporting to PBCRs. The Toolkit seeks to provide a structured, adaptable approach to drafting legislation that aligns with global standards while accommodating local legal and policy contexts.

Methods
The McCabe Centre for Law and Cancer, in collaboration with the International Agency for Research on Cancer (IARC) and the African Cancer Registry Network (AFCRN), designed a multi-component resource. Global health lawyers based in Australia, New Zealand, Kenya, The Philippines and Samoa undertook review and analysis of existing global cancer registry laws, regulations and best practices, integrating feedback from legal and health policy experts and drew upon expert guidance from IARC and AFCRN to develop these resources.

The Toolkit comprises:
A technical report outlining key legal principles and global examples;
A fillable legislation template for drafting cancer registry laws;
A searchable database of existing national laws for comparative analysis.

Results
The Toolkit is now freely and publicly available as IARC Technical Report 49 on the IARC website (https://publications.iarc.who.int/656), and provides a step-by-step process for law development, including needs assessment, stakeholder consultation, drafting, and implementation. It addresses essential elements such as mandatory reporting, data privacy, confidentiality, indemnity, and enforcement provisions. By offering customizable templates and practical guidance, the Toolkit enables countries to create robust legal frameworks that support comprehensive cancer registration and improve data quality for cancer control planning.

Conclusions/Implications for Practice or Policy
This Toolkit represents a much-needed resource to advance global cancer surveillance efforts. By facilitating the enactment of legally sound, context-sensitive cancer registry laws, it promotes data completeness, strengthens health systems, and supports evidence-based cancer control policies. Countries can therefore accelerate progress towards international standards, enhancing their capacity to monitor and reduce the cancer burden.  The authors hope that wide dissemination and feedback will lead to further refinement of the Toolkit, thereby strengthening approaches to cancer registry regulation worldwide.