A patient’s personal information may be entered into the ABDR, either at a Haemophilia Treatment Centre (HTC) or when a patient enters data directly via MyABDR, and becomes part of an electronic record about the patient’s bleeding disorder condition.
To ensure that each patient is fully informed and understand what they are consenting to, they will receive a detailed privacy collection notice (linked below)which sets out how their personal information is collected, used, disclosed and protected by the NBA. This notice may be provided as a printed notice and form when the patient visits an HTC, or through the MyABDR application.
The requirement for consent for ABDR/MyABDR data recording applies:
- for all new patients
- for all patients using MyABDR to record data, from the first time they log in
- through a progressive transition process for existing patients that commenced on 26 January 2015 for future data collection for patients whose data is already being recorded in ABDR.
Patient information brochure (pdf) (116.36 KB)
Patient information brochure (docx) (465.38 KB)
Patient registration form (pdf) (84.17 KB)
Patient registration form (docx) (205.67 KB)
HTC implementation protocol (pdf) (115.27 KB)
HTC implementation protocol (docx) (194.27 KB)
Other information for patients
The following resources have been developed to provide further information and assistance to patients and their parents, carers, guardians and authorised representatives:
ABDR/MyABDR Consent to Privacy - leaflet (pdf) (361.64 KB)
Haemophilia Treatment Centre resources
- Talk to your doctor or nurse at your Haemophilia Treatment Centre
- Talk to the ABDR support team at the National Blood Authority (NBA):
- For more information on MyABDR and ABDR, you can also: