Research Capabilities by Registry

Research Capabilities by Registry

Researcher Information on Accessing Data from U.S. and Canadian Registries

The Registry Data Access Information Reporting Tool includes information for member cancer registries including the following :

  • A matrix of the capacity for various research uses of cancer registry data (e.g. rapid case ascertainment)
  • Contact information for each registry including names, phone number, email address, and registry website address
  • Registry requirements for data access by outside investigators including requirements of the Institutional Review Board (Ethics board in Canada), including accessibility of required forms
  • Summary of consents and processes required before patient contact
  • Description of fee requirements to obtain cancer registry data
  • General Information on registry coverage including the oldest year of available data and extent of case-sharing among other registries

This information is updated by registries annually in December during the Call for Data Process.

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