Australian Bleeding Disorders Registry

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.

Statistics currently available on people with bleeding disorders underestimate the total number requiring

access to clotting factor product. By registering your patients, you will increase the accuracy of these

statistics to ensure there is sufficient product available to meet the clinical needs of your patients.

How will this change the way I treat my patients?

It won't! Patients will continue to access treatment and clotting factor product the same way they do now.

What do I need to do?

Register your patients by completing the ABDR Patient Registration form and faxing it to your 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 from 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.

Where can I get more information?

For more information about the ABDR and the registration of patients visit the AHCDO web site or call AHCDO

on (03) 9885 1777 or email info@ahcdo.org.au