Registry Governance

 

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, St John of God Health Care, St Vincent’s Hospital Melbourne and UnitingCare Health. 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 Calvary North Adelaide Hospital, contact the Director of Mission, Calvary Health Care Adelaide, on (08) 8405 3624.
  • 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 St John of God Health Care, contact the Executive Officer, St John of God Health Care Human Research Ethics Committee, on (08) 6116 0542 or email ethics@sjog.org.au
  • Regarding conduct of the NGOR at The Wesley Hospital, contact the Coordinator, UnitingCare Health Human Research and Ethics Committee, on (07) 3232 7500 or email ethics@uchealth.com.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 research@monashhealth.org
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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.