Information for Researchers
WHAT IS THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY?
WHAT IS THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY?
WHAT SORT OF DATA IS CAPTURED IN THIS REGISTRY?
WHY IS THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY IMPORTANT?
WHAT IS THE APPLICATION PROCESS?
All researchers interested in undertaking research using de-identified information held in the Australian Haemochromatosis Registry must first submit their proposal to the Australian Haemochromatosis Registry Research Approval Committee (AHRRAC) for review and assessment. The AHRRAC will only approve the use of de-identified information for research that is high quality and has a high chance of improving the health and wellbeing of people with haemochromatosis. Researchers must gain ethics approval for their research projects and the research must be compliant with all relevant legal or other requirements.
Email registry@ha.com.au for more information.
WHAT IS THE APPLICATION REVIEW SCHEDULE?
WHAT IS THE APPLICATION REVIEW SCHEDULE?
RESEARCH APPROVAL COMMITTEE MEMBERS
Professor Katie Allen
FRACP PhD FAHMS
Dr Peter Bentley
Dr Nicole Jenkins
Dr Dan Johnstone
Mr Tony Moorhead
Secretary
Professor John K Olynyk
Professor Grant Ramm
Professor Nathan Subramaniam
Professor Katie Allen
Fellow of the Academy of Health and Medical Sciences
Professor Allen’s research focuses on on preventive health. She has spent more than 20 years working to understand how best to use genetic testing to identify and prevent Haemochromatosis- a disease prevented by blood donation if identified early enough. She is internationally recognised as a strong advocate for population-based genetic screening for hereditary haemochromatosis.
Dr Peter Bentley
Senior Medical Officer Lifeblood.
Former Chair of the WA Department of Health HREC (2016-2023)
Dr Bentley’s research interests include Blood Safety and Haemochromatosis.
Dr Nicole Jenkins,
Molecular Gerontology Group
Florey Institute
Dr Nicole Jenkins conducts research focusing on the biology of ageing and neurodegeneration.
She is the Co-founder of FeBI Technologies, which is developing a quantum sensing technology that prevents missed and misdiagnosis of iron disorders.
Dr Dan Johnstone
School of Biomedical Sciences and Pharmacy
College of Health, Medicine and Wellbeing
The University of Newcastle
Dan’s PhD research focused on iron overload, specifically the effects of haemochromatosis on molecular systems in the brain. He continues to work on research projects relating to haemochromatosis and the central nervous system (brain and retina) with collaborators from around the world. Dan joined Haemochromatosis Australia’s management committee at the 2013 AGM, and is also a past President of the Australian Society for Medical Research (ASMR).
Mr Tony Moorhead
Secretary
Tony is a retired federal public servant with extensive experience in project management, marketing and communication, business analysis and organisation development. As someone with haemochromatosis Tony brings a patient’s perspective to research proposals.
Professor John K Olynyk
Hepatologist, Fiona Stanley Fremantle Hospital Group
Professor Olynyk is a Gastroenterologist & Hepatologist with over 30 years experience as a specialist, primarily at The Fiona Stanley Fremantle Hospital Group where was Head of Gastroenterology from 2010 until July 2020. He has a strong interest in teaching and mentoring medical trainees. He has a track record of continuous NHMRC funding since 1999 for research in the field of liver disease, focusing predominantly on basic and clinical research in iron overload disorders and the pathogenesis of chronic liver injury and cancer.
Professor Grant Ramm
Professor Ramm’s research focuses on understanding the pathobiological mechanisms associated with scar tissue formation in the liver (hepatic fibrosis) in haemochromatosis and how inflammation drives fibrosis progression to cirrhosis and ultimately liver cancer. This research is also focused on clinical translation including the early detection of patients at risk of serious liver disease complications, better monitoring of disease progression, and development of new therapeutics to treat inflammation and hepatic fibrosis.
Professor Nathan Subramaniam
School of Biomedical Sciences, Faculty of Health, Queensland University of Technology (QUT)
Prof Nathan Subramaniam’s research focusses on understanding the genetics and pathophysiology of iron overload disorders, and defining the molecules and mechanisms involved in iron regulation. His work has been instrumental in identifying and defining many genetic mutations associated with hereditary hemochromatosis as well as genetic modifiers of HFE-related hereditary hemochromatosis.