Governance of the Australasian Oncofertility Registry
The Australasian Oncofertility Registry has a well documented governance structure which incorporates representation from cancer and fertility clinicians as well as psychologists, statisticians, epidemiologists and consumers. It also includes representation from each state and territory.
The Australasian Oncofertility Registry Governance structure (see Australasian Oncofertility Registry Governance Policy Version 1.4 and dated 14th October 2014) ensures that the registry runs efficiently; operates at all times within legal constraints, particularly with regard to data security and confidentiality; is able to monitor outcomes and deal appropriately with clinical issues arising from the data analysis; is appropriately managed by people who have clearly identifiable roles and responsibilities; and has a process for engagement and commitment of all relevant stakeholders.
The Australasian Oncofertility Registry governance structure comprises of four groups:
- The FUTuRE Fertility Research Group – this group is responsible for managing the day to day aspects of the AOFR. This group comprises of the Data Custodian, the Chief Investigator, the National Project Manager and Clinical Research Assistant’s in each state and territory.
- The Australasian Oncofertility Registry Steering Committe – this group oversees the governance of the AOFR and maintains the confidence of all aspects of the study with all parties.
- The Investigator Group – this group consists of a fertility and cancer specialist from each state and territory of participating centres in Australia and New Zealand, the Chief Investigator, The National Project Manager and the Data Custodian. This group provides feedback about local recruitment and study management; provides local assistance to other investigators in each state and feedback to the Oncofertility Steering Committee about any governance issues.
- The FUTuRE Fertility Consumer Group – this is a group of consumers who have been involved in the protocol and study development, have been instrumental in developing the FUTuRE Fertility website, patient and clinician resources. There will be two consumer members on the AOFR Steering Committee at any given time, and representation will be made up of members from different states.
The governance structure will be reviewed on an annual basis to ensure that the AOFR is keeping in-line with the requirements specified by the Australian Commission on Safety and Quality in Health Care (ACSQHC) Strategic, Operational and Technical Principles.