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 within Monash University’s School of Public Health and Preventive Medicine.
A clinical quality registry (CQR) 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 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.
The NGOR is divided into several modules (Ovarian, tubal and peritoneal (OTP) cancer; rare ovarian tumour; endometrial cancer; cervical cancer; and vulvar cancer). Most tumour cell types are included in each module, but due to differences in treatment, prognosis and management, some rarer subtypes may be excluded.
What data do we collect?
The NGOR gathers information about the diagnosis, treatment and outcomes of women with gynaecological cancers.
Currently, data are collected about the type of cancer and how it was diagnosed, how it was treated (including surgeries and surgical complications), and various other 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) and patient-reported experience measures (PREMs) provide unique insights directly from patients about their treatment(s), symptom burden, quality of life, and experience with the Australian healthcare system. A pilot study to assess the collection of PROMs and PREMs data within our OTP cancer module was recently completed, and we expect to begin implementation in the near future.
Funding
The NGOR’s pilot phase was generously supported by Ovarian Cancer Australia, the Australian Society of Gynaecologic Oncologists (ASGO) and the CASS Foundation.
An Audrey Voss Gynaecological Cancer Research Grant, awarded by the Epworth Medical Foundation allowed the registry to develop and pilot data collection for our endometrial, cervical and vulvar cancer modules.
On May 8th 2020 (World Ovarian Cancer Day), the NGOR was awarded an Medical Research Future Fund (MRFF) to fund our Ovarian, Tubal and Peritoneal Cancer Module, and Rare Ovarian Tumour Module.
More recently, the NGOR was awarded a Medical Research Future Fund (MRFF) Research Data Infrastructure grant to develop a national linked cervical cancer clinical quality registry.
Other funding has been received by the NGOR from industry collaborators and personal donors.
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.
