Establishment of the Registry

The Registry is being established as part of Ms Jodie Ingles (Registry Coordinator) PhD project. Jodie is carrying out her PhD through the Central Clinical School, University of Sydney. A/Prof Chris Semsarian, A/Prof John Atherton and A/Prof Julie McGaughran are supervising this project.

Registry Advisory Committee

In accordance with the National Health and Medical Research Council (NHMRC) Guidelines for Genetic Registers and Associated Genetic Material, the National Genetic Heart Disease Registry is governed by an Advisory Committee. This committee comprises investigators from all major recruiting centres, the Registry Coordinator and a patient representative.

The Registry Advisory Committee oversees all decisions relating to the functioning of the Registry, and approves any research to be carried out using Registry data.

The committee includes:

Ms Jodie Ingles – Registry Coordinator
PhD student / Assoc Genetic Counsellor
Agnes Ginges Centre for Molecular Cardiology, Centenary Institute AND
Cardiology Department, Royal Brisbane & Women’s Hospital
Herston Road, Herston QLD 4029
Ph. 07 3636 3244 Fax. 07 3636 3251
j.ingles@centenary.org.au jodie_ingles@health.qld.gov.au

A/Prof Chris Semsarian
Program Head, Agnes Ginges Centre for Molecular Cardiology, Centenary Institute
Molecular Cardiologist, Royal Prince Alfred Hospital, Sydney

A/Prof John Atherton
Director of Cardiology, Royal Brisbane & Women’s Hospital

A/Prof Julie McGaughran
Medical Director, Genetic Health QLD, Royal Children’s Hospital Brisbane

A/Prof Robert Weintraub
Paediatric Cardiologist, Royal Children’s Hospital Melbourne

A/Prof Andrew Davis
Paediatriac Cardiologist/Electrophysiologist, Royal Children’s Hospital Melbourne

A/Prof Jitendra Vohra
Cardiologist, Royal Melbourne Hospital, Melbourne

Ms Liz Jones
Patient Representative