I Have Haemochromatosis
WHY SHOULD I REGISTER?
WHY SHOULD I REGISTER?
Do it for your family. The results of research using your data could help improve the health and well-being of your extended family and for other Australians. The success of the Australian Haemochromatosis Registry depends on your willingness to join and allow your de-identified data to be used by researchers
While we know that around 1 in 150 Australians have the genetic pre-disposition for haemochromatosis there are many unanswered questions about individual experiences.
For example, we do not know much about when and how people were diagnosed, what their symptoms were at the time of diagnosis, how often they are treated with venesections, what has been the impact on their mental and physical health, how many others in their family have the condition and how they feel about having a chronic condition, knowing they can pass on the defective gene to their children.
The more people register, the richer the pool of information available. It will also support opportunities for future research into the impact of iron on the brain and facilitate research into new treatments for all the conditions mentioned above.
WILL MY INFORMATION BE SAFE?
The security of the information and data you provide to the Australian Haemochromatosis Registry is covered by Australian laws and privacy regulations.
Data from the Australian Haemochromatosis Registry can only be used by approved research projects in Australia. Some of these research projects may involve international collaborations.
While we will do everything we can to protect your privacy and confidentiality, there is a small risk that breaches could happen. In rare cases, researchers might identify you from your information. If this happens, researchers are required by law to maintain your privacy and report any breaches to us and to the relevant ethics committee/privacy officers. If a breach of privacy happens, it will be dealt with in line with Australian privacy laws and guidelines.
HOW DO I PARTICIPATE IN THE AUSTRALIAN HAEMOCHROMATOSIS REGISTRY?
There are two options for participation in the Australian Haemochromatosis Registry. You may choose to participate in one or both of the following options:
- online questionnaires
- linkage to health and lifestyle data*
* data by government agencies including but not limited to pathology test results, scan and X-ray reports, gene test results, prescription medicines dispensed.
When you register we will ask you to complete a short questionnaire online asking you for information about your diagnosis and treatment, and some questions about your general health and lifestyle. We will also ask you to complete a consent form. If you consent to data linkage, the Australian Haemochromatosis Registry may request that information held about you held by Commonwealth and State health agencies, health care providers, Services Australia and the Australian Institute of Health and Welfare be linked to your record in the Australian Haemochromatosis Registry. This may include your data from:
- digital or electronic medical records (EMR) from hospitals
- day clinics and pathology services
- your ‘My Health Record’
- other longitudinal research studies you may have enrolled in such as the 45 & Up Study
If you are eligible to participate in research on haemochromatosis we will also ask you to complete a similar questionnaire every five years.
WHAT IF I WANT TO STOP TAKING PART?
WHAT IF I WANT TO STOP TAKING PART?
If you choose to join the registry and participate in research but change your mind later, your decision will not affect your medical treatment or healthcare in any way.
You may decide that
- you do not want to be contacted for future surveys or research projects but you are happy for your data to be kept in the Registry to be used for future research, or
- you do not want to be contacted for future surveys or research projects and request that all your data be removed from the Registry and destroyed so that it cannot be used for future research. You should be aware that is is not possible to remove information from studies that have already been published’
To withdraw you can contact the Australian Haemochromatosis Registry using the details below. Once you withdraw, we will not contact you again.
- to ask for clarification of information already provided
- to ask for further information and seek your consent for future research
- to update your contact details and upload pathology reports
You can contact us
You can contact the Australian Haemochromatosis Registry at any time.