Data Release

• Data Release Guidelines – April 2024

  • Cancer registries are the stewards of registry data and must work to ensure that the data they collect and curate are used in accordance with high ethical standards and for the common good. The value of cancer registry data is realized through data use. The purpose of this document is to describe different conditions under which cancer registry data are requested from a central registry for research and to outline the steps that a registry can responsibly take prior to, during, and after data release to ensure patient confidentiality while also supporting cancer data use.

• Data Requests from Individuals – January 2023

  • Central cancer registries can receive requests for information about specific individuals reported to the cancer registry. This Requests from or on behalf of Patients for Individual-level Information from Central Cancer Registries document aims to provide information about the role of a central registry when responding to these types of inquiries and provides recommended practices.

• HIPAA Resources for Cancer Registries
  • This provides information and legal resources that outlines how HIPAA is applied to US cancer registries for both data collection and release. While many of these documents are historical, they are still relevant as the legislation still applies.
• Indemnification Primer – Original Release January 2022; Reviewed May 2023
  • Indemnification is a common obligation in contracts. The parties who enter into a contract together often use the language of the contract to contemplate potential problems and to plan for who will be responsible for such problems. This Primer provides an overview of how indemnification clauses are used in standard Data Use Agreements.

• National Death Index Fact Sheet – April 2021
  • The National Death Index (NDI) Fact Sheet describes the benefit of central cancer registry linkage with NDI and clarifies allowable use of the NDI data resulting from the linkage.

Data Security

• What is MFA and Why Its’s a Good Thing – January 2023

  • This Factsheet provides an overview of MFA to help registries understand the need and nature of new log-in requirements from funding and other agencies.

• Data Destruction Primer – Original Release January 2022; Reviewed August 2023
  • The Data Destruction Primer provides a high-level understanding of why data destruction, or media sanitization, are important and some best practices for data destruction.
• Data Encryption and Hashing Primer – January 2023

  • This Data Encryption and Hashing Primer provides a high-level overview on the topics of data encryption and data hashing, including an overview of different types of encryption, and what they are and can be used for, including hashing. This Primer also outlines concepts that should be understood when hashing is used with outside parties.

Software and Tools

• CDAC: Resources for Confidentiality and Data Access Information
• Computational Aspects of Statistical Confidentiality (CASC) Project

NAACCR Record Uniqueness

• An Executable Record Uniqueness Program for Moderate-Sized Files
• A SAS Program for Record Uniqueness for Large Files
• Description of the method

Older Content

• Inventory of Best Practice Assurances of Data Confidentiality
• Data Security and Confidentiality
• North of the Border Workshop I: Surveillance Data Access and Confidentiality Protection in Canadian Cancer Registries
• Confidentiality in Data Release