Governance

The development of ARRK has been approved by the Sydney Children’s Hospitals Network (SCHN) Human Ethics Committee, who the ARRK Working group report to annually.

Further, the ARRK Working group report to the Australian and New Zealand Society of Nephrology (ANZSN), via a written report.

All participants in the registry are given Patient Information Sheets, and have to provide written consent to be part of the registry.

The website is managed by an external company but the database is housed on a secure server. This ensures tight security of the data, similar to health information stored in a hospital.