What is the NGOR?
The National Gynae-Oncology Registry (NGOR) is a newly established clinical quality registry for gynaecological cancers, led by Professor John Zalcberg, an oncologist and cancer researcher, and Associate Professor Robert Rome, a gynaecological oncologist. The registry is operated by a team of researchers within Monash University’s School of Public Health and Preventive Medicine (SPHPM).
A clinical quality registry (CQR) is a database that systematically collects health information about people with a particular disease (in this case gynaecological cancers) to monitor their outcomes and report on quality of the care that is provided to them. CQRs measure and monitor how closely care provided to Australian patients aligns with international experience and evidence-based practice guidelines. CQRs can be used to identify significant variation in care and outcomes, and drive improvements. You can read more information about clinical quality registries on the Australian Commission of Safety and Quality in Healthcare website.
That National Gynae-Oncology Registry is divided into several modules, with each module based on the tumour’s anatomical location. Most tumour cell types will be included in each module, but due to differences in treatment, prognosis and management, some rarer subtypes may be excluded.
With patient permission, the registry gathers information from existing hospital databases about the diagnosis, treatment and outcomes of women with gynaecological cancers. As the registry grows, it will expand to other hospitals without existing databases. Alternative methods of data collection are being explored, e.g. hospital staff entering data directly into the registry.
Currently, data are collected about the type of cancer and how it was diagnosed, how it was treated (including surgeries and surgical complications), and about various outcomes such as survival. These data are used to measure and monitor the overall quality of care given to women with gynaecological cancers and to report these measures back to clinicians and hospitals so that care can be improved.
Patient-reported outcome measures (PROMs) are questionnaires completed by patients, which ask how the disease itself, health services and interventions have affected their quality of life. PROMs provide data on important outcomes that might otherwise not be reflected in clinical databases or medical records. For example, they may ask about pain, appetite and impact on psychological health, distress and social roles. PROMs are not currently being collected in the NGOR, but we are exploring ways to include them in the future.
The OVARIAN CANCER REGISTRY (OvCR).
Piloted between 2017 & 2019, the OvCR is now in a transition phase.
The Epworth Expansion Project.
The modules for the remaining gynaecological cancers (vulvar, vaginal, cervical and endometrial/uterine) are currently in development, to be piloted in 2021.
Meet the Team
The NGOR is governed by a Steering Committee, a committee of gynaecological oncologists, medical oncologists, registry experts, and representatives from our registry partners. The Committee has developed quality indicators for the ovarian cancer pilot module, drawing from extensive clinical experience and current national and international guidelines and published literature.
The registry is led by Professor John Zalcberg (Academic Lead), Head of the Cancer Research Program at Monash University, and Associate Professor Robert Rome (Clinical Lead), Consultant Gynaecological Oncologist at Epworth HealthCare.
OAM MB BS, PhD, FRACP, FRACMA, FAHMS, FAICD
Head, Cancer Research Program Monash University
Professor John Zalcberg is a medical oncologist and has been involved in cancer research for decades. He is the inaugural Tony Charlton Chair of Oncology at Alfred Health and Professor of Cancer Research at Monash University.
He was the Director of the Division of Cancer Medicine at the Peter MacCallum Cancer Centre in Melbourne, Australia for 17 years and a founder of the Lorne Cancer Conference and the Australasian Gastrointestinal Trials Group (AGITG). He is immediate past Chair of the Board of AGITG after serving in this role for over 15 years and a past Board Member of Cancer Trials Australia. He is the current Co-Chair of the Cancer Drugs Alliance and Chair of the Australian Clinical Trials Alliance.
Professor Zalcberg received a Medal of the Order of Australia Award (OAM) and the 2011 Cancer Achievement Award from the Medical Oncology Group of Australia. He has published more than 250 articles in peer-reviewed journals and continues active involvement in clinical trials and clinical practice.
MB, BS, FRCS(Ed), FRCOG, FRANZCOG, CGO
Consultant Gynaecological Oncologist, Epworth HealthCare
Associate Professor Robert Rome is a consultant gynaecological oncologist at Epworth Freemasons Hospital, East Melbourne.
He is a past Chairman of the Australian Society of Gynaecological Oncologists (ASGO) and a past President and Honorary Life Member of the Australian Society for Colposcopy and Cervical Pathology (ASCCP). He was also the Inaugural and Immediate Past Chairman, Clinical Institute of Obstetrics & Gynaecology, Epworth HealthCare and he currently serves on the Epworth Cancer Services Institute Executive Committee.
Associate Professor Rome’s special interests include surgery and long-term outcomes in gynaecological cancer and quality assurance and clinical audit in gynaecological oncology.
His other interests include the management of women with pre- and early invasive cancers of the lower female genital tract.
The National Gynae-Oncology Registry pilot phase was generously supported by Ovarian Cancer Australia, the Australian Society of Gynaecologic Oncologists (ASGO) and the CASS Foundation.
The Audrey Voss Gynecological Cancer Research Grant, from the Epworth Medical Foundation is supporting the Expansion of The National Gynae-Oncology Registry to establish a set of appropriate and meaningful quality indicators and data sets for each of the tumour site modules (endometrial cancer, cervical cancer and vulvo-vaginal cancer) & to pilot data collection in a step-wise fashion for each of these tumour site modules.
On May 8th 2020 (World Ovarian Cancer Day), the NGOR was one of eight research projects to be awarded funding from the Medical Research Futures Fund (MRFF) to contribute to a greater understanding of ovarian cancer. This funding is being used build upon the two year OTP cancer pilot; collecting clinical data and patient reported outcomes (PROs) to provide risk adjusted, benchmarked assessments of quality of care (QoC) to healthcare providers. This funding is from June 2020 – June 2025.
Information about funding bodies:
Ovarian Cancer Australia is a patient advocacy group, providing women affected by ovarian, tubal and peritoneal cancers, their families and friends, with information and support. They run face-to-face support groups, tele-support groups and an online forum which supports women to share their personal stories and connect with other women going through similar experiences. Ovarian Cancer Australia also provides Resilience Kits – free guides containing information on diagnosis, treatment, wellbeing and support for patients and their family, as well as links to support services. In addition to providing information and support to patients and their families, Ovarian Cancer Australia supports a number of research efforts including the National Gynae-Oncology Registry’s ovarian, tubal and peritoneal cancer module. To order or download a Resilience Kit, or to access information, support and webinars and to find out more about Ovarian Cancer Australia, go to www.ovariancancer.net.au or call them on 1300 660 334.
The CASS (Contributing to Australian Scholarship and Science) Foundation is a private philanthropic foundation which supports and promotes the advancement, research and practice of education, science and medicine.
The Australian Society of Gynaecologic Oncologists (ASGO) is a non-profit organisation established in 1986. The Society’s primary objective is to promote and improve standards of care of patients with gynaecologic cancer. They also work to promote postgraduate, undergraduate and community education in the area of gynaecologic oncology and to promote research into gynaecological cancer. ASGO members also advise and assist in the training and teaching of gynaecologic oncologists.