FAQS

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 abdr@monash.edu

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.

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.

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.

No, there is no cost to you to participate in the ABDR. The Registry is fully funded by the Commonwealth Government.

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.

The data is housed with the Data Custodian, Monash University.

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. (link access)

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.

The data is housed with the Data Custodian, Monash University.

Data is housed within the Monash University “red zone” which is compliant with ISO27001 standards (bank level security).

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.

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.

Public reports will never include identifiable patient information and all data will be de-identified before it is shared with research collaborators.

Public reports will contain aggregate (unidentifiable) data only. Surgeons may receive reports of their own identifiable patient data. Sites 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 aggregate data. However, all requests must be compliant with the Data Access and Publication Policy.