Protocol Development:- Full protocol, information sheets and consents available.

Ethics Status:- Multisite HREC approval and SSA approval in the majority of participating sites.

Methods Paper Published:- A study protocol for the Australasian Oncofertility Registry Monitoring referral patterns and the uptake, quality and complication of fertility preservation strategies in Australia and New Zealand.

Study Team:– Dr Anazodo Anazodo, Mrs Brigitte Gerstl, Prof Catharyn Stern, Prof Robert McLachlan, Ms Franca Agresta, Prof Richard Cohn, Dr Yasmin Jayasinghe, Prof Claire Wakefield, Dr Matthew Kermetzis, Dr Lisa Orme, Professor Handan Wand, Prof Rosalie Viney, Dr Rebecca Dean, Prof Michael Chapman, Prof William Ledger and Prof Elizabeth Sullivan.There is a lack of data on the uptake, utilisation and success of various fertility preservation (FP) processes. There is also little data on the fertility potential (potential to produce offspring) following cancer treatment as well as success of ART following cancer treatment, the psychological effects of FP and potential infertility (inability to conceive offspring). This highlights the need for further knowledge, education and support in this new area of research and for standardised guidelines to be developed.

In a world-first, the Future Fertility Research team, have launched an online registry that has captured 12 months of pilot data on cancer patient’s journey from diagnosis through to survivorship. The Australasian Oncofertility Registry is collecting data from paediatric, youth cancer and adult participating cancer and fertility centres, around Australia and New Zealand, about referrals to and uptake of fertility preservation in children, adolescents, young adults and adults (aged 0-44 years of age); as well as collecting data on the fertility potential (ability to have a child) in cancer patients after diagnosis. It is hoped that after the first year of data collection the remaining cancer centres will join the study. The program funding will provide continued funds for this study to continue to collect data from new patients but also collect survivorship data for the initial patients recruited onto the registry.The Australasian Oncofertility Registry (AOFR) will use a mixed methods approach of epidemiology and clinical research to identify and employ strategies to improve fertility outcomes for cancer survivors. The findings will assist oncologists and fertility specialists in supporting cancer patients who seek to explore family planning options before and after cancer treatment.

Hypothesis

Monitoring of the referral patterns and the uptake, quality and complication of fertility preservation strategies as well as reproductive outcomes following cancer treatment in Australia is possible using an oncofertility registry.

Aims:

• To monitor the rate of referral and uptake of fertility preservation by cancer diagnosis, demographics and cancer type.
• To examine the barriers for FP referral and uptake.
• To monitor the complications of FP in cancer patients at diagnosis.
• To investigate and monitor the return of reproductive function and timing 12 months

Methods

The Future Fertility Research team, have launched Phase I of an online registry that captures a cancer patient’s journey from diagnosis through to survivorship. The Australasian Oncofertility Registry (AOFR) is collecting data from cancer centres participating from around Australia, about referrals to and uptake of fertility preservation in children, adolescents, young adults and adults (aged 0-44 years of age); as well as collecting data on the fertility potential (ability to have a child) in cancer patients after diagnosis.

In phase 2 we will open the study to all paediatric centres around Australia and in addition to collecting a complete data set about uptake and utilisation, we will begin to collect reproductive data in the survivorship period.