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.
