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:

  1. Appropriate background and rationale for project

  2. Appropriate study design

  3. Feasible timelines

  4. Appropriate level of statistical support

  5. Appropriate funding including provision for the cost of obtaining data from Fontan Registry data set

  6. Study conforms to the original consent statement

  7. Clear level of protection of personal information

  8. Ethics approval granted

  9. Compliance with the Fontan Registry Researcher Agreement

  10. Clear reporting process of results with appropriate acknowledgement of source of data

  11. 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

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