Australian Bleeding Disorders Registry (ABDR)

ABDR Annual Reports

Australian governments have funded the redevelopment of the Australian Bleeding Disorders Registry (ABDR) to provide a clinical tool for specialist staff in designated treatment centres and clinics and to improve treatment outcomes for patients with bleeding disorders across Australia. It was implemented in December 2008.

This redevelopment has been undertaken by the National Blood Authority (NBA), in collaboration with the Australian Haemophilia Centre Directors' Organisation (AHCDO), Haemophilia Foundation Australia and all Australian governments.

The ABDR will be used to register all patients who require clotting factor replacement therapy, in order to gain a better understanding of the incidence and prevalence of bleeding disorders. This information will also be used to understand demand for, and to facilitate ordering of, clotting factor product.

How does the ABDR work?

The system is seamless for patients. They access treatment and clotting factor product through their Haemophilia Treatment Centre (HTC). HTC data mangers and nurses enter data into the system after consent has been given by patients.

What needs to be done?

Doctors need to register their patients by completing the ABDR Patient Registration Form and faxing it to the nearest Haemophilia Treatment Centre or Bleeding Disorders Clinic. Copies of the ABDR Patient Registration Form and a contact list for treatment centres and clinics can be downloaded here or by visiting http://www.ahcdo.org.au.

What about patient privacy?

Only the health care team and support staff involved in providing medical services have access to the personal information of their patients. Other authorised users only have access to limited, depersonalised and/or summary information where all identifying information is removed to protect patient privacy.

Download the ABDR Patient Pamphlet.

Where to go for more information?

For more information about the ABDR and the registration of patients download the ABDR FAQ, visit http://www.ahcdo.org.au or call AHCDO on (03) 9885 1777 or info@ahcdo.org.au.

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