Developing a clinical quality registry for gynaecological cancers.

Abstract

The National Gynae-Oncology Registry (NGOR) operates a CQR within the Cancer Research Program (CRP) at Monash University. It aims to capture clinical data on newly-diagnosed cancers of the uterus; ovary, fallopian tubes, peritoneum (OTP); cervix and vulva and vagina in Australia. In 2019, funds from the Audrey Voss Gynecological Research Grant, resulted in an expansion from original OTP cancer module to three registry modules for endometrial, cervical and vulvar-vaginal cancers, with the aim of developing a suite of quality indicators (QIs) and a minimum dataset for the three cancer types. Once developed, pilot data collection will begin for at least one of the modules. The expansion project will utilise the NGORs existing infrastructure and methodology from the OTP cancer module. In that module, the NGOR Steering Committee developed nine QIs (measures of adherence to best practice care), based upon existing evidence-based guidelines and current literature. The OTP module has now recruited over 675 registrants and published its first QI report in March 2020. The OTP pilot showed that use of existing databases had the potential to reduce time and costs associated with primary data collection. However, it also became apparent that variation between databases (including definitions, differing data formats and missing data), meant that the registry did not have the required information for risk adjustment. The registry has addressed these challenges so that the NGOR can achieve its aim of improving quality of care.The NGOR is making steady process, and the Expert Working Groups for each of the tumour modules are progressing well within their work. The most common gynaecological cancer is endometrial cancer for which thirteen QI’s have been identified as being relevant and feasible, and these are currently being refined. An increasing number of clinicians and units in VIC, NSW, SA and Tasmania participating in the project. Ongoing funding will be sought in order to continue support for this project and expand it to all states.