State-Specific Cancer Data Access Requirements for Research

At a glance

CDC evaluated federal, state, and local government policies regarding cancer research to promote the use of cancer registry data for research.


Cancer Registry Research Approval Process: Classification of States by Level of Approval Required presents each state cancer registry's requirements regarding research, by level of regulatory approval required, as of February 2018.

The project involved collecting:

  • Human subjects review (institutional review board [IRB]) application content and processes.
  • Required consent processes.
  • Data access procedures.
  • Data linkage processes.
  • Release of identifiers for patient contact by researchers.

This project:

  • Clarifies the requirements for accessing cancer registry data for research.
  • Identifies optimal state and registry rules and policies for the use of cancer registry data for research.
  • Investigates ways to streamline IRB processes and to pilot test implementation of the best methods.
  • Helps researchers manage the process of accessing registry data, including facilitating the IRB process.

You can get more information about cancer data access at the state level through the project SharePoint site. To request access to the SharePoint site, please send email.