Bleeding Disorders

Under the National Blood Agreement, the National Blood Authority (NBA) arranges for the supply of a range of blood products for the treatment of bleeding disorders. The major bleeding disorders are:

  • Haemophilia A – deficiency in coagulation factor VIII
  • Haemophilia B – deficiency in coagulation factor IX
  • Von Willebrand disease – deficiency in von Willebrand factor

A number of products supplied under the NBA are specifically for the treatment of these conditions.

Comprehensive care arrangements for bleeding disorder treatment in Australia

Many people with bleeding disorders are treated at Haemophilia Treatment Centres (HTCs) which are specialist centres that provide comprehensive care to people with haemophilia and similar conditions. The comprehensive care model ensures that preventative and general treatment on the complex aspects of haemophilia are given in a coordinated way by a multi‐disciplinary team within the one centre.

HTCs were established under a decision by Australian Health Ministers' Advisory Council (AHMAC) in February 2001, to provide a leadership role within their hospital, city and outlying areas to ensure optimal care and an equitable distribution of professional and therapeutic resources, together with responsible record keeping.

The contact details of the Australian HTCs are available on the Australian Haemophilia Centre Directors' Organisation website. Current list of HTC's are listed in the table below.
 

TABLE: Australian Haemophilia Treatment Centres

Hospital

Haemophilia Treatment Centre/Clinic

The Canberra Hospital

Haemophilia Clinic

Calvary Mater Newcastle

Haemophilia Treatment Centre

Royal Prince Alfred Hospital

Haemophilia Treatment Centre

Sydney Children’s Hospital

Centre for Children's Cancer and Blood Disorders

The Children’s Hospital at Westmead

Haemophilia Treatment Centre

Prince of Wales Hospital

Prince of Wales Bleeding Disorders Clinic

Westmead Hospital

Westmead Bleeding Disorders Clinic

Royal Darwin Hospital

Haemophilia Treatment Centre

Royal Brisbane and Women’s Hospital

Queensland Haemophilia Centre

Lady Cilento Children’s Hospital

Queensland Haemophilia Centre Child and Adolescent

Service

Royal Adelaide Hospital

South Australia Haemophilia Treatment Centre

Women’s and Children’s Hospital

South Australia Haemophilia Treatment Centre

Royal Hobart Hospital

Tasmanian Haemophilia Treatment Centre

The Alfred Hospital

Ronald Sawers Haemophilia Centre

Royal Children’s Hospital

Henry Ekert Haemophilia Treatment Centre

Princess Margaret Hospital

The Haemophilia Centre of Western Australia

Hollywood Private Hospital

The Haemophilia Centre of Western Australia

Fiona Stanley Hospital

The Haemophilia Centre of Western Australia

Organisations involved in treating or supporting people with bleeding disorders

The effective care of patients with bleeding disorders in Australia benefits from the involvement of a number of organisations:

  • Haemophilia Foundation of Australia (HFA) which represents the Australian bleeding disorders community and is committed to improving treatment and care through representation and advocacy, education and the promotion of research.
  • Australian Haemophilia Centre Director’s Organisation (AHCDO) which is the national medical body for haemophilia in Australia.  The NBA provides funding to AHCDO for a range of advice, services and management activities to support the effective management of bleeding disorders in Australia.
  • A number of specialist health professional groups which are supported by HFA and facilitate professional expertise in the range of disciplines which support the comprehensive care of people with bleeding disorders including:
    • Australian Haemophilia Nurses Group
    • Australia/New Zealand Haemophilia Social Workers’ and Counsellors’ Group
    • Australian and New Zealand Physiotherapy Haemophilia Group

Australian Bleeding Disorders Registry (ABDR) and MyABDR

The Australian Bleeding Disorders Registry (ABDR) is a database that is designed 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.

The NBA provides funding through AHCDO for data managers to be employed in each Haemophilia Treatment Centre, and AHCDO supports a data manager's group to ensure coordination and consistency of data entry.  All data entry occurs within a framework of privacy and security to ensure patient privacy is protected.

MyABDR is a secure app for smartphones (Android and iOS) and a web site for people with bleeding disorders or parents/caregivers to record home treatments and bleeds.  For further information about MyABDR see MyABDR.

Guidelines for the Management of Haemophilia in Australia

Visit Guidelines for Treatment of Haemophilia and Related Conditions for information on clinical practice guidelines developed to support the effective management of people with bleeding disorders in Australia.