The Registry

What is the NGOR?


The National Gynae-Oncology Registry (NGOR) is a 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 the 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 in practice. 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.

Data Collection


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; for example, 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 recurrence and 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 currently in development for the NGOR, and we expect to begin implementing them in the near future.

Modules


The Ovarian Cancer Registry (OvCR) is the largest and most developed of the NGOR’s modules. It was piloted between 2017 and 2019, and has resulted in the recruitment of more than 1,000 patients with newly-diagnosed ovarian, tubal and peritoneal cancers. 

As of 2021, the Endometrial Cancer Module has commenced its pilot stage with the modules for cervical and vulvo-vaginal cancers set to follow within the next few months. We thank the Epworth Medical Foundation for their generous support, which has enabled the development of these new modules and will allow the NGOR to continue its expansion.

Meet the Team


The NGOR is governed by a Steering Committee, a team 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.

 

Professor John Zalcberg

NGOR Academic Lead

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 a former Chair of the Board of AGITG, having served in this role for over 15 years, and is also 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.

Associate Professor Robert Rome

NGOR Clinical Lead

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.

Operational Team

Alice Sporik is a project officer for the NGOR and has been working in the registry space for nearly two years. She has joined the team to help expand the registry to include cervical, endometrial and vulvar cancer. Alice is now working on integrating PROMs into a clinical quality registry setting. She is passionate about women’s health.

Aleesha Whitely joined the NGOR team as a research assistant in March 2021, following her completion of a Bachelor of Health Science at Swinburne University. In addition to her coursework, she spent 12 months working as a Data Scientist for Defence Science & Technology Group, and also conducted a research project on autism spectrum disorder, which she expects to publish a manuscript on in the near future.

Tran Nguyen began her studies with a Bachelor of Human Anatomy and Physiology and graduated from a Masters of Health Information Management in 2020. With experience in healthcare and hospital services, including clinical casemix coding, implementation of new electronic health systems and the ACEMID cohort study, Tran has joined and made contributions to the OvCR as an honorary research assistant.

Chelsea White joined the NGOR team as a research assistant in January 2021, following completion of a Bachelor of Psychological Sciences with Honours at Flinders University. Whilst undergoing her studies, Chelsea worked in the healthcare industry for a gynaecology medical specialist. Chelsea is passionate about improving the quality of care provided to women diagnosed with gynaecological cancers.

Funding


The NGOR pilot phase was generously supported by Ovarian Cancer Australia, the Australian Society of Gynaecologic Oncologists (ASGO) and the CASS Foundation.

The Audrey Voss Gynaecological Cancer Research Grant, from the Epworth Medical Foundation is supporting expansion of the NGOR. This project is focused on establishing a set of appropriate and meaningful quality indicators and datasets for each of the new tumour site modules (endometrial, cervical and vulvo-vaginal cancers), and to pilot data collection in a stepwise fashion for each of these 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 to contribute to a greater understanding of ovarian cancer. This funding is being used to build upon the two year ovarian, tubal and peritoneal cancer pilot, by collecting clinical data and patient reported outcomes to provide risk-adjusted, benchmarked assessments of quality of care to healthcare providers. This funding will be provided from June 2020 to June 2025.

Information about Funding Bodies

Ovarian Cancer Australia is a patient advocacy group, providing women affected by ovarian, tubal and peritoneal cancers, and their families and friends, with information and support. They run face-to-face support groups, tele-support groups and an online forum which enables 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 useful resources. In addition to providing information and support to patients and their families, Ovarian Cancer Australia promotes a number of research efforts, including the NGOR’s ovarian, tubal and peritoneal cancer module. To order or download a Resilience Kit, or to access information, support and webinars, please visit their website or call 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 for patients with gynaecological cancers. They also work to promote postgraduate, undergraduate and community education in the area of gynaecological oncology and to foster research into this area. ASGO members also advise and assist in the training and teaching of gynaecological oncologists.