Registry Governance

PROJECT GOVERNANCE


The UGICR is housed in the School of Public Health and Preventive Medicine (SPHPM) at Monash University. The operational team are part of the Cancer Research Program headed by Professor John Zalcberg. Clinical oversight and registry support is provided to the operational team by a Steering Committee and two clinical working parties.

The Steering Committee oversees corporate and clinical governance and promote activities within the registry.  The committee meets at least twice a year, and is responsible for overseeing the registry. The committee provides oversight of the registry’s activities including ensuring that the quality of data is monitored and that policies are established to address issues of clinical interest or significance that may arise, including those relating to quality of care. The committee comprises project investigators, senior clinicians, senior registry and staff from SPHPM and a consumer representative.

Two working groups provide clinical guidance on the development of each registry module. The Hepatopancreatobiliary Working Group advises on the pancreatic, biliary and primary liver cancer modules and the Oesophagogastric Working Group advises on the oesophageal and gastric cancer modules.

ETHICS


The UGICR is also a registered project with the Monash University Human Research Ethics Committee (MUHREC). The ethical aspects of the UGICR have been approved by the Human Research Ethics Committees of Monash Health, Epworth HealthCare, the Aboriginal Health and Medical Research Council of New South Wales and the Cancer Council Victoria. 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.
  • Mr Kyle Heffernan, Epworth HealthCare Human Research Ethics Committee, on 03 9426 9906 or email hrec@epworth.org.au.
  • Chairperson of the Aboriginal Health & Medical Research Council Ethics Committee, on 02 9212 4777.
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DATA SECURITY


The UGICR 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.

POLICY DOCUMENTS


The UGICR Data Access and Publication policy are currently in development. Please return to this page at a later date.
If you require further information, please contact the UGICR Coordinator.