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.