How to contact the ABDR

If you would like to access data from the ABDR please make a written request to AHCDO indicating the data required and the purpose for which it will be used. If you are a student your request must be on your educational institute's letterhead and include your supervisor's endorsement. All requests will be considered by the AHCDO executive committee and a recommendation passed on to the NBA.

What is the Australian Bleeding Disorder Registry?

The Australian Bleeding Disorder Registry (ABDR) is a major initiative of AHCDO and receives funding from the National Blood Authority (NBA). The registry currently collects data from haemophilia treatment centres at public hospitals in every State in Australia. The purpose of the registry is to collect data to assist in the treatment of people with bleeding disorders and to plan for future needs including the supply of FVIII and the treatment of inhibitors, hepatitis C and HIV. In addition, it is used to analyse product use and surgery outcomes.

The ABDR fits the strategy of both AHCDO and the NBA to provide data on treatment and clinical outcomes and blood product usage for patients with haemophilia and rare coagulation disorders:

• Data from the ABDR can identify actual health outcomes of patients treated with blood products and blood product issues in a variety of clinical conditions.
• Analysis of ABDR data may allow AHCDO to modify recommended treatment methods if necessary.
• The data collected will enable the NBA to coordinate and budget for the supply of recombinant and plasma-derived clotting factors; improve prevention and treatment regimes for this group of patients, and assist in the development of national policy on clotting factors and treatment for people with bleeding disorders.

Haemophilia research has become more important recently because of the increasing cost of treatment and an increase in the amount of treatment products used. A review of the literature reveals that there is little Australian haemophilia research published. One of the inherent problems of haemophilia research is sample size. Haemophilia is rare and in Australia where a relatively small population is spread over a large area, collaboration is required between the treatment centres to pool data. Prior to the implementation of the ABDR, multi-centre projects did not occur routinely in Australia and treaters had to rely on the published data from overseas studies. A few small informal studies may have been conducted at the individual centres however it is now easier to carry out haemophilia research because multi-centre clinical data is pooled in the ABDR.