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.

 

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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

Data Managers Group

Chairs: Ms Natalie Heriot & 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

Ovarian, Tubal & Peritoneal Working Group

Chair: Associate Professor Robert Rome

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

Vulvo-Vaginal 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 Vulvo-Vaginal Cancer Module

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

Expansion Reference Group

Chair: Dr Rhonda Farrell

Supports the NGOR in achieving its goal of 100% population capture

NGOR Operational Team

Managed by Ms Natalie Heriot

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

Endometrial 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

Cervical 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

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

Data Linkage Reference Group

Chair: Professor Penny Webb

Supports the NGOR Operational Team in linking the OvCR’s data with national administrative datasets

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 OTP cancers

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 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:

  • Ms Deborah Dell, Manager, Monash Health Human Research Ethics Committee, on 03 9594 4611
  • A representative of the Epworth HealthCare Human Research Ethics Committee, on 03 9426 9906 or email hrec@epworth.org.au
  • Administrative Officer, Mercy Health Human Research Ethics Committee, on (03) 8458 4808
  • Executive Officer of the HREC (Tasmania) Network on (03) 6226 6254 or email human.ethics@utas.edu.au
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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.