title: A Study Protocol for the Australasian Oncofertility Registry: Monitoring Referral Patterns and the Uptake, Quality, and Complications of Fertility Preservation Strategies in Australia and New Zealand.
abstract: Improvements in cancer diagnosis and treatment in patients of a reproductive age have led to significant improvements in survival rates; however, a patient's fertility can be affected by both cancer and its treatment. As survival rates improve, there is an expectation by clinicians and patients that patient's reproductive potential should be considered and protected as much as possible. However, there is a lack of data about current fertility preservation (FP) uptake as well as accurate data on the acute or permanent reproductive risks of cancer treatment, complications of FP in cancer patients, and the use and success of assisted reproductive technology by cancer survivors. FP remains a major gap in acute cancer management with lifelong implications for cancer survivors. The FUTuRE Fertility research team has established the first binational multisite Australasian Oncofertility Registry, which is collecting a complete oncofertility data set from cancer and fertility centers in Australia and New Zealand. Outcomes from the research study will monitor referral, uptake, and complications of FP, document patient's reproductive potential after treatment, and collect data on the use of assisted reproductive technology following cancer treatment. The data will be linked to other routine health and administrative data sets to allow for other research projects to be carried out. The changes in oncofertility care will be benchmarked against the Australasian Oncofertility Charter. The data will be used to develop evidence-based guidelines and resources, including development of accurate risk projections for patients' risk of infertility, allowing clinicians to make recommendations for FP or assisted reproductive technology. Australian New Zealand Clinical Trials Number-12615000221550.
authors.affiliation: 1 Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, New South Wales, Australia .|2 Sydney Youth Cancer Service , Sydney, New South Wales, Australia .|3 Kids Cancer Centre, Sydney Children's Hospital , Sydney, New South Wales, Australia .|4 Prince of Wales Hospital , Sydney, Australia .
authors.forename: Antoinette C
authors.initials: AC
authors.lastname: Anazodo
authors.affiliation: 5 Melbourne IVF , Melbourne, Victoria, Australia .|6 The Royal Children's Hospital , Parkville, Victoria, Australia .
authors.forename: Catharyn J
authors.initials: CJ
authors.lastname: Stern
authors.affiliation: 7 Monash IVF , Richmond, Victoria, Australia .|8 Andrology Australia, School of Public Health and Preventive Medicine, Monash University , Prahran, Victoria, Australia .
authors.forename: Robert I
authors.initials: RI
authors.lastname: McLachlan
authors.affiliation: 3 Kids Cancer Centre, Sydney Children's Hospital , Sydney, New South Wales, Australia .|9 The Kirby Institute, University of New South Wales , Kensington, New South Wales, Australia .
authors.forename: Brigitte
authors.initials: B
authors.lastname: Gerstl
authors.affiliation: 5 Melbourne IVF , Melbourne, Victoria, Australia .
authors.forename: Franca
authors.initials: F
authors.lastname: Agresta
authors.affiliation: 1 Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, New South Wales, Australia .|3 Kids Cancer Centre, Sydney Children's Hospital , Sydney, New South Wales, Australia .
authors.forename: Richard J
authors.initials: RJ
authors.lastname: Cohn
authors.affiliation: 6 The Royal Children's Hospital , Parkville, Victoria, Australia .|10 Department of Obstetrics and Gynaecology, The University of Melbourne , Royal Women's Hospital, Parkville, Victoria, Australia .
authors.forename: Yasmin
authors.initials: Y
authors.lastname: Jayasinghe
authors.affiliation: 1 Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, New South Wales, Australia .|3 Kids Cancer Centre, Sydney Children's Hospital , Sydney, New South Wales, Australia .
authors.forename: Claire E
authors.initials: CE
authors.lastname: Wakefield
authors.affiliation: 3 Kids Cancer Centre, Sydney Children's Hospital , Sydney, New South Wales, Australia .
authors.forename: Genevieve
authors.initials: G
authors.lastname: Daly
authors.affiliation: 4 Prince of Wales Hospital , Sydney, Australia .
authors.forename: Daisy
authors.initials: D
authors.lastname: Chan
authors.affiliation: 3 Kids Cancer Centre, Sydney Children's Hospital , Sydney, New South Wales, Australia .
authors.forename: Lorrae
authors.initials: L
authors.lastname: Gilbert
authors.affiliation: 6 The Royal Children's Hospital , Parkville, Victoria, Australia .|10 Department of Obstetrics and Gynaecology, The University of Melbourne , Royal Women's Hospital, Parkville, Victoria, Australia .
authors.forename: Matthew
authors.initials: M
authors.lastname: Kemertzis
authors.affiliation: 6 The Royal Children's Hospital , Parkville, Victoria, Australia .|11 Peter MacCallum Cancer Centre , East Melbourne, Victoria, Australia .
authors.forename: Lisa M
authors.initials: LM
authors.lastname: Orme
authors.affiliation: 9 The Kirby Institute, University of New South Wales , Kensington, New South Wales, Australia .
authors.forename: Handan
authors.initials: H
authors.lastname: Wand
authors.affiliation: 12 University of Technology Sydney , Broadway, New South Wales, Australia .
authors.forename: Rosalie
authors.initials: R
authors.lastname: Viney
authors.affiliation: 13 University of Technology Sydney, Australia .
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
authors.affiliation: 14 The Royal Hospital for Women , Sydney, New South Wales, Australia .|15 Discipline of Obstetrics & Gynaecology, School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, New South Wales, Australia .
authors.forename: Rebecca
authors.initials: R
authors.lastname: Deans
authors.affiliation: 16 Salesforce Australia, Sydney, New South Wales, Australia .
authors.forename: Murali
authors.initials: M
authors.lastname: Jetti
authors.affiliation: 16 Salesforce Australia, Sydney, New South Wales, Australia .
authors.forename: John
authors.initials: J
authors.lastname: Wu
authors.affiliation: 14 The Royal Hospital for Women , Sydney, New South Wales, Australia .|15 Discipline of Obstetrics & Gynaecology, School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, New South Wales, Australia .
authors.forename: Michael
authors.initials: M
authors.lastname: Chapman
authors.affiliation: 14 The Royal Hospital for Women , Sydney, New South Wales, Australia .|15 Discipline of Obstetrics & Gynaecology, School of Women's and Children's Health, UNSW Medicine, University of New South Wales , Sydney, New South Wales, Australia .
authors.forename: William
authors.initials: W
authors.lastname: Ledger
authors.affiliation: 12 University of Technology Sydney , Broadway, New South Wales, Australia .
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Sullivan
mesh_terms: D000293:Adolescent; D000328:Adult; D001315:Australia; D005260:Female; D005298:Fertility; D059247:Fertility Preservation / Q000379:methods*; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000150:complications*; D009520:New Zealand; D012042:Registries; D055815:Young Adult
keywords: Australasian Oncofertility Registry; assisted reproductive treatment; fertility preservation; fertility preservation services; oncofertility