Information for Researchers

WHAT IS THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY?

WHAT IS THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY?

The Australian Haemochromatosis Registry is a national collection of de-identified data from people in Australia living with haemochromatosis.

WHAT SORT OF DATA IS CAPTURED IN THIS REGISTRY?

Data captured in the baseline survey includes age of diagnosis, iron indicators at diagnosis, symptoms at diagnosis and co-morbidities. Participants will be asked to update their information at 5 yearly intervals.

WHY IS THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY IMPORTANT?

The Registry will ultimately lead to better health outcomes for individuals with haemochromatosis, their families and others in the community, by enabling research into the impact of too much iron on health and well-being.

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?

Expressions of interest and full applications (with Ethics approval) may be submitted at any time throughout the year. AHRRAC will meet quarterly to make decisions about requests for access.
Downloadable documents:

RESEARCH APPROVAL COMMITTEE MEMBERS