About participating in the ABDR
Do I have to contribute my data to the ABDR?
No, you do not have to contribute your data – participation is entirely voluntary.
However, it is important to note that this is an opt-out registry and your details will automatically be included in the ABDR unless you notify us you do not want to participate.
TO OPT OUT : call 1800 998 722 or email firstname.lastname@example.org
Should you decide to take part you are not required to take any action. If you later change your mind, you are free to withdraw at any time.
I want to contribute my data; what do I have to do?
Speak to your surgeon and ask whether they contribute to the ABDR. If your surgeon is contributing, you will automatically be included. If your surgeon is not currently contributing, please ask them to contact the Registry Coordinator on 03 9903 0205 to find out how to submit your data.
If I had surgery overseas, can I still provide my details to the ABDR ?
In the future we hope to have the capacity to include details of breast device surgery undertaken overseas. We recommend you keep details of your device surgery, at minimum the device sticker, for your own health records.
Does it cost anything to participate?
No, there is no cost to you to participate in the ABDR. The Registry is fully funded by the Commonwealth Government.
How do I change my personal details with the registry?
Please update your details by completing the forms below and returning them to the ABDR. We do ask for your name and date of birth for verification purposes.
For any queries about the ABDR, please contact the ABDR Coordinator on (03) 9903 0205.
Where do I find out more information about ALCL?
About data security
Is my information secure? Who will have access?
Your information is managed according to policies and procedures covering privacy, data access, and governance. The ABDR complies with State and Commonwealth Privacy Laws and is overseen by a Human Research Ethics Committee.
Your information will be housed within Monash University’s “red zone” which is compliant with ISO27001 standards (bank level security). Protocols are in place to ensure that the highest levels of privacy and safety are maintained.
Who holds the data?
The data is housed with the Data Custodian, Monash University.
How can I access my information?
Access to the data is strictly controlled by the Steering Committee. Protocols are in place to ensure that the highest levels of privacy and safety are maintained; all Monash employees sign a confidentiality agreement and access to registry data is strictly controlled.
You may apply to access your own information at any time by applying to the Registry Coordinator. For reasons of privacy and patient confidentiality, all requests must be compliant with the ABDR Data Access and Publication Policy.
How will my information be used in reports?
A key purpose of the ABDR is to report to stakeholders, such as the Department of Health, TGA and device manufacturers on issues of device performance and quality of care. Please note, at no time will you be identifiable in these reports; all public reports will contain aggregate data only.
Surgeons may receive reports on their own identifiable patients’ data. Health care sites, such as hospitals, will receive reports of their own aggregate data but no identifiable patient data.
Patients can apply to the Registry Coordinator to access their own data and researchers can apply to the Steering Committee to access the database. However, all requests must be compliant with the ABDR Data Access and Publication Policy.