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This toolkit, developed by the McCabe Centre for Law and Cancer (Australia), with the support of the International Agency for Research on Cancer (IARC) and the African Cancer Registry Network (AFCRN), is intended to serve as a resource to support countries to establish a legal basis for the mandatory reporting of cancer diagnoses to a population-based cancer registry. The toolkit comprises a report and several online tools to enable a structured approach to drafting a law. It ensures compliance with international best practice while allowing flexibility for local adaptation.

Contents

• Contributors
• Chapter 1. Introduction and quick start guide
  Davoren Sondra, Donald Maxwell Parkin, Biying Liu, Ma-Anne Rosales Sto. Domingo, Rachel Kitonyo-Devotsu, Hayley Jones, and Freddie Bray.
  • 1.1. Orientation
  • 1.2. Quick start guide
  • 1.3. Cancer registries
  • 1.4. Preliminary issues and environment scan
  • 1.5. Steps for developing a cancer registry law
  • 1.6. Technical support
• Chapter 2. Elements of a cancer registry law: notes
  Davoren Sondra, Donald Maxwell Parkin, Biying Liu, Ma-Anne Rosales Sto. Domingo, Rachel Kitonyo-Devotsu, Hayley Jones, and Freddie Bray.
  • 2.1. Title and commencement
  • 2.2. Purpose
  • 2.3. Definitions
  • 2.4. Establishment of the National Cancer Registry
  • 2.5. Mandatory reporting
  • 2.6. Supply of further information
  • 2.7. Data privacy, access, use, and confidentiality
  • 2.8. Indemnity
  • 2.9. Offences
  • 2.10. Regulations
  • 2.11. Transitional and miscellaneous provisions
  • 2.12. Checklist for developing cancer registry legislation
• Chapter 3. Template for elements of a cancer registry law
  Davoren Sondra, Donald Maxwell Parkin, Biying Liu, Ma-Anne Rosales Sto. Domingo, Rachel Kitonyo-Devotsu, Hayley Jones, and Freddie Bray.
  • 3.1. Title and commencement
  • 3.2. Purpose
  • 3.3. Definitions
  • 3.4. Establishment of the National Cancer Registry
  • 3.5. Mandatory reporting
  • 3.6. Supply of further information
  • 3.7. Data privacy, access, use, and confidentiality
  • 3.8. Indemnity
  • 3.9. Offences
  • 3.10. Regulations
  • 3.11. Transitional and miscellaneous provisions
• References
• Annex 1. National law from South Africa
• Annex 2. National law from the Republic of Korea

About the Series

Suggested citation:

Davoren S, Parkin DM, Liu B, Rosales Sto. Domingo MA, Kitonyo-Devotsu R, Jones H, Bray F (2025). Developing a legal framework for population-based cancer registries: a toolkit (IARC Technical Publication No. 49). Lyon, France: International Agency for Research on Cancer. Available from:https://publications.iarc.who.int/656. Licence: CC BY-NC-ND 3.0 IGO.

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