Registry Data Access Procedure
Any groups who would like to access Australian and New Zealand Fontan Registry data need to make a written application which will be reviewed by the Fontan Registry Steering Committee.
The following are the criteria for approval of release of the Fontan Registry data:
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Appropriate background and rationale for project
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Appropriate study design
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Feasible timelines
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Appropriate level of statistical support
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Appropriate funding including provision for the cost of obtaining data from Fontan Registry data set
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Study conforms to the original consent statement
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Clear level of protection of personal information
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Ethics approval granted
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Compliance with the Fontan Registry Researcher Agreement
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Clear reporting process of results with appropriate acknowledgement of source of data
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Appropriate acknowledgement of the Australian and New Zealand Fontan Registry, with approval of authorship by the Fontan Registry Publications Sub-Committee, in any publication or presentation of the research project.
If you are considering an application, you must initially contact the Fontan Registry to discuss the process, costs and required documentation. Email: info@fontanregistry.com