ACSQHC-ARCR-483

The National Gynae-Oncology Registry (NGOR) is a multi-modular clinical quality registry (self-reported) which aims to record diagnostic, treatment and outcome data of patients with newly diagnosed gynaecological cancers. This information is used to monitor and minimise variation in care, improve patient outcomes, and identify trends and potential gaps in service provision. The NGOR was developed by a group of likeminded clinicians in collaboration with the Cancer Research Program in Monash University’s School of Public Health and Preventive Medicine in 2017. The NGOR finalised a list of quality indicators for endometrial cancer module, which was piloted in Victoria and Tasmania. The registry is in the process of developing quality indicators for additional registry modules covering cancers of the endometrium, cervix, vulva and vagina.

The Ovarian Cancer Registry (OvCR), a sub-registry of the NGOR, has two active modules for ovarian, tubal and peritoneal cancer, and rare ovarian tumours. A Patient Reported Outcome Measures (PROMs) pilot began at the end of 2022, which aims to test the feasibility and acceptability of a bespoke patient reported outcome (PRO) and patient reported experience (PRE) tool developed through clinical and consumer consultation.

The NGOR is endorsed by the Australian Society of Gynaecologic Oncologists (ASGO), >40 gynaecologic oncologists and medical oncologists specialising in gynaecological cancers, and the patient advocacy group Ovarian Cancer Australia. Data are collected primarily from pre-existing clinical unit databases from major gynaecologic cancer treatment centres and private practices. There are a number of private and public health services participating across Victoria, New South Wales, South Australia, Tasmania, Western Australia, Queensland with sites to be added in the Australian Capital Territory in the short-term.

The NGOR operates under an opt-out model of recruitment and is governed by a committee of clinical experts, registry experts, a consumer representative, Ovarian Cancer Australia representatives and more.