The Australasian Oncofertility Registry Custodian

The Australasian Oncofertility Registry has a AOFR Data Custodian who is responsible for the operation and management of the AOFR in conjunction with the Natioal Project Manager ( see the Australasian Oncofertility Registry Data Custodianship Policy, Version 1.4 and dated 14th October 2014).

The Data Custodian is responsible for:

  • allowing data to be entered directly onto the AOFR by authorised and registered health care providers;
  • storage of data required to achieve the objectives of the registry;
  • compliance with the Australian Commission on Safety and Quality in Health Care (ACSQHC) strategic, operational and technical principles;
  • maintenance of data under highly secure conditions and in accordance with study governance policies, accreditation standards and Human Research Ethics Committees (HREC) requirements;
  • maintaining patient privacy at all times regarding personal data collected and stored on the registry;
  • developing collaborative links in order to extend the reach of the registry;
  • supporting the Australasian Oncofertility Registry Steering Committee;
  • management of the administrative processes required to support a centralised national fertility preservation registry;
  • publication of annual reports;
  • preparation of research data sets and reports for cancer and fertility centres.