NAACCR Data Release Guidelines Published!

What are best practices for deciding when to release cancer registry data to researchers? Which type of inter-institutional agreements might be required? How should your registry handle cases reported solely by Veterans Affairs or inter-registry data exchange in deidentified data sets? How might you best support potential participants when providing data for clinical trials?

All these questions and more are covered in the NAACCR Data Release Guidelines, which were released this month.

The value of cancer registry data is realized through data use. As stewards of cancer data, central registries work to ensure that the data they collect and curate are used in accordance with high ethical standards and for the common good. The NAACCR Data Release Guidelines outline considerations for central registries when releasing data, describe different types of data requests a central registry might receive from researchers, and provide recommended protocols for each request type prior to data release.

Data release guidelines were identified as a high priority need for the NAACCR community in a 2020 Data Security & Confidentiality Workgroup survey. The NAACCR Data Release Guidelines are a product of feedback from member registries on draft versions of the document, feedback from a workshop held at the 2023 NAACCR Annual Conference, and dedicated work on the part of the Data Security & Confidentiality Workgroup membership.

These guidelines are a “living” document that will be updated annually. Please contact Bozena Morawski and Lauren Maniscalco with questions and/or suggestions for expanded content.

The Data Security & Confidentiality Workgroup (Research and Data Use Steering Committee) thanks the registries and other cancer surveillance professionals that have provided feedback on this document to date. Additional resources published by the Data Security & Confidentiality Workgroup are available on the NAACCR website.