Register
The Australian Haemochromatosis RegistrY
The Australian Haemochromatosis RegistRY
What is the Australian Haemochromatosis Registry?
The Australian Haemochromatosis Registry is a national collection of de-identified data from Australian individuals with haemochromatosis. It is a collaborative project between 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 is the custodian of the Australian Haemochromatosis Registry and is responsible for the safe and secure storage of your personal information. Haemochromatosis Australia is the point of contact for participating patients and researchers seeking access to information for research.
Who are our research partners?
The development of the Australian Haemochromatosis Registry was a collaboration between Haemochromatosis Australia, QIMR Berghofer Medical Research Institute, Edith Cowan University and Queensland University of Technology with support from Hunter Medical Research Institute and the Australian Red Cross Lifeblood. Haemochromatosis Australia is responsible for the Registry governance, guided by the Research Approval Committee.
Why is it important?
The Australian Haemochromatosis Registry enables research into the role of iron in a number of related chronic health conditions including liver disease, arthritis, diabetes and heart conditions. It will also support opportunities for future research into the impact of iron on the brain and facilitate research into new treatments. All research projects conducted using de-identified information from the Australian Haemochromatosis Register will ultimately benefit the health of people with haemochromatosis.
What is the approval process for researchers wanting access to my information?
A carefully considered approach
Researchers submit their research proposal
Researchers submit their research proposal to the Australian Haemochromatosis Registry Research Approval Committee for review and assessment.
Review and Assess
The Australian Haemochromatosis Registry will only approve the use of your information for research that is high quality and has a high chance of improving the health and wellbeing of people with haemochromatosis.
ethics approval
Before researchers are allowed access to information in the Australian Haemochromatosis Registry they must gain ethics approval for the research project. Their research must be compliant with all relevant legal or other requirements.
I am a person with haemochromatosis and want to registER
When you register we will ask you to complete a short questionnaire asking you about your general health and lifestyle.
If you are eligible to participate in research on haemochromatosis we will also ask you to complete a similar questionnaire every five years, and for your consent to link health information about you such as general practice, pharmaceutical, pathology and hospital records held in other sources.
Contact us
You can email patientregistry@ha.org.au or call 1300 019 028 for more information.
When can I register and when will the registrY be available to researchers?
When can I register and when will the registrY be available to researchers?
We plan to launch the registry at a Parliamentary Friends of Haemochromatosis event at Australian Parliament House on 14 August 2024. We will be able to accept registrations very soon after that. We will update this website when registrations are available.
From the end of 2024 researchers will be able to apply to the Australian Haemochromatosis Registry for access to your de-identified information for their projects. They will also be able to apply to link the results generated from your data to other existing health records.
I am a researcher
I’m interested in undertaking research, using information held in the registry. What do I do?
We’ve created a step by step process.
- Researcher submits Expression of interest
- Advisory Committee determines appropriateness
- Researcher gains ethics approval
- Researcher submits detailed request for access
- Advisory Committee determines approval
- Access granted
- Reserach report annually to Advisory Committee
Who is funding the Australian Haemochromatosis Registry?
Who is funding the Australian Haemochromatosis Registry?
The Australian Department of Health and Aged Care has funded the development of the Australian Haemochromatosis Registry.