Registry Governance

 

 

GOVERNANCE


The NGOR operates as part of the Cancer Research Program within Monash University’s School of Public Health and Preventive Medicine. The university holds legal and ethical responsibility for the functioning of the registry. The NGOR’s Operational Team is provided support and direction by a multidisciplinary Steering Committee. In addition, each NGOR module has a dedicated working group responsible for providing clinical oversight and expertise. Executive committees have been established to support the achievement of project milestones for our ovarian, tumour and peritoneal (OTP) cancer module, rare ovarian tumour module and cervical cancer module. Executive committees will be established for our endometrial cancer and vulvar cancer modules when funding is secured. Further details on each element of the NGOR’s governance structure can be found below.

 

NGOR governance structure_241030

NGOR Steering Committee

Chair: Professor John Zalcberg

Responsible for determining the NGOR’s objectives and direction, promoting scientific and ethical rigour in the collection and analysis of data, and encouraging the use of registry data for hypothesis-driven research.

Members: Dr Lyndal Anderson, Ms Bridget Bradhurst, A/Prof Alison Brand, Dr Paul Cohen, Dr Carol Douglas, A/Prof Arul Earnest, A/Prof Rhonda Farrell, Dr Andrea Garrett, Dr Simon Hyde, Dr Liane Ioannou, Dr Yeh Chen Lee, A/Prof Orla McNally, Ms Anne Mellon, Dr Mahendra Naidoo, A/Prof Robert Rome, A/Prof Stephen Thompson, Ms Estefania Vicario, Prof Penny Webb, Ms Kristin Young, Prof John Zalcberg

NGOR Operational Team

Managed by Dr Sharnel Perera

Responsible for the NGOR’s functioning and operations.

Members: Dr Sharnel Perera, Ms Sherine Sandhu, Ms Aleesha Whitely, Tahlia Knights

Ovarian, Tubal & Peritoneal Cancer Working Group

Chair: A/Prof Rhonda Farrell

Clinical experts on ovarian, tubal and peritoneal (OTP) cancers who are responsible for providing clinical expertise and oversight for the OTP Cancer Module.

Members: Prof Michael Friedlander, Dr Paul Cohen, A/Prof Robert Rome

Rare Ovarian Tumour Working Group

Chair: Dr Yeh Chen Lee

Clinical experts on rare ovarian tumours who are responsible for providing clinical expertise and oversight for the Rare Ovarian Tumour Module.

Members: Dr Lyndal Anderson, Dr Michael Burling, Dr Paul Cohen, Dr Julie Lamont, Dr Yeh Chen Lee, Dr Mahendra Naidoo, Prof Gary Richardson, A/Prof Rob Rome, Prof Clare Scott

Ovarian, Tubal and Peritoneal Cancer Executive Committee

Chair: Professor John Zalcberg

Provides support to achieve project milestones and adherence to reporting requirements for the Medical Research Future Fund (MRFF) grant.

Members: A/Prof Alison Brand, A/Prof Arul Earnest, Prof David Bowtell, Prof Gary Richardson, Dr Sharnel Perera, Dr Liane Ioannou, Prof Madeleine King, A/Prof Orla McNally, Dr Paul Cohen, Prof Penny Webb, A/Prof Rhonda Farrell, A/Prof Rob Rome, Dr Simon Hyde, Ms Bridget Bradhurst, Prof Sue Evans, Prof John Zalcberg

Cervical Cancer Working Group

Chair: A/Prof Selvan Pather

Clinical experts on cervical cancer who are responsible for providing expertise and oversight for the Cervical Cancer Module

Members: Dr Michael Burling, Dr Yeh Chen Lee, Prof Kailash Narayan, A/Prof Selvan Pather, Dr Archana Rao, A/Prof Rob Rome, A/Prof Stephen Thompson

Cervical Cancer Executive Committee

Chair: Professor John Zalcberg

Provides support to achieve project milestones and adherence to reporting requirements for the Medical Research Future Fund (MRFF) grant.

Members: Dr Lyndal Anderson, Prof Deborah Bateson, Prof Julia Brotherton, Ms Kate Broun, Ms Kirsty Browne, Dr Paul Cohen, Prof Sue Evans, Dr Simon Hyde, A/Prof Pearly Khaw, A/Prof Rob Rome, Prof Marion Saville, A/Prof Megan Smith, Prof Jane Ussher, Prof John Zalcberg

Endometrial Cancer Working Group

Chairs: A/Prof Alison Brand & A/Prof Orla McNally

Clinical experts on endometrial cancer who are responsible for providing expertise and oversight for the Endometrial Cancer Module

Members: A/Prof Sumitra Ananda, A/Prof Alison Brand, Dr Viet Do, A/Prof Orla McNally, A/Prof Rob Rome

Vulvar Cancer Working Group

Chair: Dr Geoffrey Otton

Clinical experts on vulvar cancer who are responsible for providing expertise and oversight for the Vulvar Cancer Module

Members: Dr David Bernshaw, Dr Paul Cohen, Ms Anne Mellon, Dr Geoffrey Otton, A/Prof Rob Rome, A/Prof Peter Sykes, A/Prof Stephen Thompson

PROMs Reference Group

Chair: Dr Sharnel Perera

Responsible for the development and collection of Patient Reported Outcome Measures (PROMs) within the NGOR.

Members: Prof Gary Richardson, Ms Bridget Bradhurst, Ms Kristin Young, Dr Paul Cohen, Prof Penny Webb, A/Prof Robert Rome, Dr Simon Hyde, Dr Yeh Chen Lee, Ms Sherine Sandhu, Dr Sharnel Perera

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 Consumer Liaison Officer, Mercy Health Human Research Ethics Committee, on (03) 8416 7783 or email feedback@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.