GOVERNANCE
The NGOR operates as part of the Cancer Research Program within Monash University’s School of Public Health and Preventive Medicine (SPHPM). The university holds legal and ethical responsibility for the functioning of the registry. Clinical oversight and registry support is provided to the Operational Team by a multidisciplinary Steering Committee. The NGOR also comprises several Working Groups, each of which are headed by clinical specialists whose insight and expertise has enabled the registry to establish itself as a credible and effective driver of healthcare quality improvements. Further details on each element of the NGOR’s governance structure can be found below.

NGOR Steering Committee
Chair: Professor John Zalcberg
Focused on determining the registry’s objectives and direction, promoting scientific and ethical rigour in the collection and analysis of data, and encouraging the use of registry data as a foundation for hypothesis-driven research in Australia
Members: Prof Martin Oehler, Dr John Miller, Prof Gary Richardson, Dr Tom Manolitsas, A/Prof Rhonda Farrell, A/Prof Robert Rome, Dr Sellva Paramasivam, Dr Geoff Otton, Dr Murad Al-Aker, Dr Paul Cohen, Dr Simon Hyde, Dr Adam Pendlebury, Prof Tom Jobling, Dr Andrea Garrett, Dr Michael Bunting, A/Prof Penny Blomfield, Prof Anthony Proietto, Dr Greg Gard, A/Prof Orla McNally, Dr Deborah Neesham, A/Prof Sumitra Ananda, Dr Greg Robertson, Dr Anthony Richards, A/Prof Alison Brand, Dr Michael Burling, A/Prof Lyndal Anderson, Estefania Vicario, A/Prof Arul Earnest, Prof Sue Evans, Janice Antony, Kristen Young, Sue Hegarty, Cyril Dixon, Jane Hill, Anne Mellon, Prof Michael Friedlander
NGOR Operational Team
Managed by Ms Alice Sporik & Dr Sharnel Perera
Consists of staff from the Cancer Research Program within Monash University’s School of Public Health and Preventive Medicine who are responsible for the NGOR’s functioning and operation
Members: Aleesha Whitely, Tran Nguyen, Tahlia Knights, Emily Holding
Data Managers Group
Chairs: Ms Estefania Vicario
Comprises Data Managers from each of the NGOR’s participating sites who are responsible for transferring the data of recruited participants from local medical records to the NGOR database
Members: Cathie Corrick, Carla Starmans, Daljeet Walia, Helen Steane, Kate Nicholson, Maria Beilin, Marita Annunziata, Matthew Horrigan, Melissa Campbell, Nikilyn Nevins, Rahimah Mah, Sanela Bilic, Tran Nguyen
Endometrial Cancer Working Group
Chairs: Associate Professor Alison Brand & Associate Professor Orla McNally
A small group of clinical experts on endometrial cancer who are responsible for providing expertise and oversight for the Endometrial Cancer Module
Members: A/Prof Robert Rome, A/Prof Sumitra Ananda, Dr Viet Do
Cervical Cancer Working Group
Chair: Associate Professor Selvan Pather
A small group of clinical experts on cervical cancer who are responsible for providing expertise and oversight for the Cervical Cancer Module
Members: Dr Archana Rao, Dr Michael Burling, Prof Kailash Narayan, A/Prof Robert Rome, Dr Yeh Chen Lee
Vulvar Cancer Working Group
Chair: Dr Geoffrey Otton
A small group of clinical experts on vulvar cancer who are responsible for providing expertise and oversight for the Vulvar Cancer Module
Members: Anne Mellon, Dr David Bernshaw, A/Prof Peter Sykes, A/Prof Robert Rome
Ovarian, Tubal & Peritoneal Cancer Working Group
Chair: Associate Professor Rhonda Farrell
A small group of clinical experts on ovarian, tubal and peritoneal (OTP) cancers who are responsible for providing expertise and oversight for the OTP Cancer Module
Members: Prof Michael Friedlander, Dr Paul Cohen, A/Prof Robert Rome
OvCR Executive Committee
Chair: Professor John Zalcberg
Supports the NGOR team in achieving all aims of the Ovarian Cancer Registry (OvCR) and ensures adherence to reporting requirements for the Medical Research Future Fund (MRFF) grant
Members: A/Prof Alison Brand, A/Prof Arul Earnest, Prof David Bowtell, Dr Gary Richardson, Janice Antony, Dr Liane Ioannou, Prof Madeleine King, Natalie Heriot, A/Prof Orla McNally, Dr Paul Cohen, Prof Penny Schofield, Prof Penny Webb, A/Prof Rhonda Farrell, A/Prof Robert Rome, Dr Simon Hyde, Sue Hegarty, Prof Sue Evans
PROMs Reference Group
Chair: Professor Penelope Schofield
Responsible for the development and collection of Patient Reported Outcome Measures (PROMs) – a sub-study under the MRFF grant
Members: Alice Sporik, Dr Sharnel Perera, Dr Gary Richardson, Cyril Dixon, Janice Antony, Jane Hill, Kristin Young, Dr Paul Cohen, Prof Penny Webb, A/Prof Robert Rome, Dr Simon Hyde, Sue Hegarty, Yael Lefkovits, Dr Yeh Chen Lee
Data Linkage Reference Group
Chair: Professor Penny Webb
Supports the NGOR Operational Team in linking the OvCR’s data with national administrative datasets
Members: A/Prof Arul Earnest, Estefania Vicario, Dr Julie Lamot, Dr Liane Ioannou, Dr Michael Burling, Dr Paul Cohen, A/Prof Rhonda Farrell, Dr Simon Hyde, Prof Sue Evans
Expansion Reference Group
Chair: Dr Rhonda Farrell
Supports the NGOR in achieving its goal of 100% population capture
Members: A/Prof Alison Brand, Jane Hill, A/Prof Robert Rome, Sue Hegarty
Rare Tumours Reference Group
Chair: Dr Yeh Chen Lee
Provides planning and clinical oversight of the OvCR Rare Tumours Module which covers all non-epithelial ovarian cancers
Members: Prof Clare Scott, Dr Gary Richardson, Dr Julie Lamont, A/Prof Lyndal Anderson, Dr Mahendra Naidoo, Dr Michael Burling, Dr Paul Cohen, A/Prof Robert Rome
ETHICS
The NGOR is also a registered project with the Monash University Human Research Ethics Committee (MUHREC). The ethical aspects of the registry have been approved by the Human Research Ethics Committees (HRECs) of Monash Health, Mercy Health and the University of Tasmania. Each hospital and health service actively participating in the registry have also been granted the necessary site specific approvals. This project will be carried out in accordance to the National Statement on Ethical Conduct in Human Research (2007) – Updated 2018.
If you have any complaints about any aspect of the project, the way it is being conducted or any questions about being a research participant in general, contact:
- Regarding conduct of the NGOR at Mercy Hospital for women, contact the Administrative Officer, Mercy Health Human Research Ethics Committee, on (03) 8458 4808 or email ethics@mercy.com.au
- Regarding conduct of the NGOR at Royal Hobart Hospital or Hobart Private Hospital, contact the Executive Officer of the HREC (Tasmania) Network on (03) 6226 6254 or email human.ethics@utas.edu.au
- Regarding conduct of the NGOR at all other health services, contact Ms Deborah Dell, Manager, Monash Health Human Research Ethics Committee, on (03) 9594 4611 or email resear
ch@monashhealth.org

DATA SECURITY
The NGOR database is hosted by Monash University. Monash University Registry database security is maintained using encryption of data, a managed and audited protocol for access, training and accreditation of personnel, role-based access and authentication of data. Monash University Registry databases are housed and managed in an ISO 27001 certified environment. The ISO 24001 certification incorporates the Privacy Act 1988 (Cth) and Health Records Act 2001 (Vic) within its Applicability Statement.
This means that your data is kept secure and is accessible to only a small number of staff that have been rigorously trained in privacy and confidentiality protocols. If you have any questions or concerns please don’t hesitate to contact the registry coordinator.
