Patient registry for genetic disorder

·1-min read

A world-first patient registry for people with haemochromatosis, a genetic disorder where the body absorbs dangerous levels of iron, will be launched in Australia.

An estimated one in 200 Australians are at high genetic risk of developing haemochromatosis, which is treated by regular blood donation.

The Haemochromatosis National Patient Registry will be a centralised database for research into the role of iron in chronic health problems, including liver disease, arthritis, diabetes and heart conditions.

It will also be vital for future research into the impact of iron on the brain.

According to Dr Dan Johnstone from Haemochromatosis Australia, most people are unaware of iron overload's symptoms or potential danger.

"Fatigue and sore joints are early symptoms of haemochromatosis but commonly prompt thoughts of iron deficiency rather than iron overload," Dr Johnstone said.

"Greater community awareness is needed to enable earlier diagnosis and treatment."

The registry, based at QIMR Berghofer Medical Research Institute in Brisbane, will enable more extensive studies and facilitate basic and clinical research projects.

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