Curtin University’s Professor John Olynyk has played a leading role in establishing a new national patient registry launched in Federal Parliament today, which could help drastically improve the lives of the estimated 100,000 Australians living with haemochromatosis.
Curtin Medical School’s Associate Dean, Professor Olynyk was part of a collaborative group of healthcare professionals who worked with Haemochromatosis Australia, the peak patient advocacy group for those who suffer with this disease, to develop the Australian Haemochromatosis Registry via a Federal Government Department of Health and Aged Care Chronic Disease Prevention Grant.
Haemochromatosis is Australia’s most common genetic disorder, primarily affecting people of northern European descent and sees the body accumulate too much iron, which if left untreated can lead to health complications.
Currently, medical specialists in different fields such as rheumatology, gastroenterology, hepatology, cardiology and endocrinology record patient information in their own systems — but until now there was no national registry for cataloguing data across the different medical disciplines involved in treating patients with haemochromatosis.
Professor Olynyk said the new cloud-based registry will support research into the role iron plays in many related chronic health conditions, including liver disease, arthritis, diabetes and heart conditions and would also support opportunities for future research into the impact of iron on the brain.
“The benefit of a national patient registry is that not only can it collect valuable information about people who have the specific condition, but it can also provide health outcome data to monitor patient needs and identify health problems that need prompt attention and improve the quality of care,” Professor Olynyk said.
“Haemochromatosis can present with various chronic conditions including liver disease, arthritis and fatigue, the register will assist in accelerating research, driving life-changing discoveries and better patient outcomes.
“The national registry will open up new possibilities, such as larger studies, more clinical research projects and the recruitment of patients to trial potential new therapeutic approaches or treatments across Australia.”
Funded by the Australian Department of Health and Aged Care, the registry is a collaborative project between Curtin, Haemochromatosis Australia, QIMR Berghofer Medical Research Institute, Edith Cowan University and the Queensland University of Technology, with support from Australian Red Cross Lifeblood and Hunter Medical Research Institute.
Haemochromatosis Australia spokesperson Dr Dianne Prince said the registry would ultimately have a profound impact on many people’s lives.
“Living with haemochromatosis is not only challenging but an individual journey, that requires balancing changing symptoms, treatment and the demands of daily life,” Dr Prince said.
“The creation of this national register is a great example of how consumers, researchers, clinicians and individuals afflicted by a disease, can partner together to develop systems which improve care and provide research platforms for the future.”
QIMR Berghofer Deputy Director, Professor Grant Ramm, said he believed the registry will be a game changer for scientists studying haemochromatosis and iron.
“This registry will, in time, provide a substantial resource of de-identified clinical information and patient data that will help accelerate research and drive new discoveries against haemochromatosis, a condition affecting so many Australians,” Professor Ramm said.
QUT Professor Nathan Subramaniam, an NHMRC Senior Research Fellow and Deputy Director of the QUT Centre for Genomics and Personalised Health, said increased iron accumulation is increasingly associated with many clinical conditions besides liver disease, including cancer and neurodegenerative disease.
“This important resource will be instrumental for Australian scientists and clinicians to perform groundbreaking research, not only into haemochromatosis but also associated diseases,” he said.
Visit Haemochromatosis Australia for more information and to register.
