Ethics and Governance

Registry oversight

Governance

The Steering Committee, is comprised of representatives from all participating centres. The committee provides strategic direction and oversees successful delivery of reports and research generated by the project. The ICOR Management Committee oversees day-to-day operations and reports to the Steering Committee. The Steering Committee is coordinated by the QPCR team at the Centre for Children's Health Research in Brisbane, Australia. The Management Committee is incorporated in the Queensland Paediatric Cardiac Research group at the Centre for Children's Health Research in Brisbane, Australia.

Ethics

ICOR is ethically reviewed and monitored in accordance with the Australian Government’s National Health and Medical Research Council’s (NHMRC) National Statement on Ethical Conduct in Human Research (2007) (updated in 2015 to include opt-out consent).

ICOR complies with the clinical quality registry standards and operating procedures outlined by the Australian Commission on Safety and Quality in Health Care Operating Principles

ICOR also complies with state-based Privacy Acts, such as the Victorian Privacy and Data Protection Act 2014.

We remain regularly in contact with Human Research Ethics Committees in participating hospitals and health service providers and provide them with updates on outcomes and and other issues of ethical relevance.

Participating Sites

ICOR currently receives data from the following participating sites:

1. Queensland Children's Hospital, Brisbane

2. Perth Children's Hospital, Perth

3. Royal Children's Hospital, Melbourne

4. Institut Jantung Negara, Kuala Lumpur, Malaysia

5. Starship Children's Hospital, Auckland

In the first half of 2023, ICOR plans to add the Adventist Heart Centre in Penang, Malaysia and the Bristol Children's Hospital in Bristol, England to the list of actively participating sites.

Over the next 2-3 years ICOR plans to progressively add additional sites from Taiwan, Philippines, Vietnam, Hong Kong and Singapore. In some instances, this may involve visits by team members from Brisbane to assist with data collection locally.