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Volunteer Advocate

Requesting Canadian CF Registry Data

Canadian CF Registry data can be made available for research and clinical study purposes following a formal request to Cystic Fibrosis Canada and pending the review and approval from the Registry Review Panel. There may be a fee associated with the administration, extraction and analysis of the data depending on the nature of the request.

The application form for accessing Canadian CF Registry data must be completed and forwarded to cfregistry@cysticfibrosis.ca. The request is forwarded to the Registry Review Panel comprised of Canadian CF clinicians and researchers. Additional documentation (e.g. REB approval, funding support, etc.) may be required and made available to the Registry Review Panel. If the request is approved, mandatory confidentiality agreement forms need to be signed before the release of information. After all these provisions have been met, the data will be securely transferred to the applicant.

For any concerns or questions, please contact us at cfregistry@cysticfibrosis.ca.