Australian Bleeding Disorders Registry
The ABDR is a clinical database that includes information about the bleeding disorders community and their treatment needs. It has been designed for use by clinicians, nurses, physiotherapists, social workers and data managers responsible for the care and treatment of people with bleeding disorders.
The privacy of individual patients is a key component of the registry and only the health care team and support staff involved in providing medical services to individuals have access to personal information about those individuals. The information generated provides a person’s health care team and support staff with a record to help monitor and manage treatment over time to improve the quality of the person’s life.
The ABDR was first established in 1988 with HFA funding and it has been managed by AHCDO since that time. A major redevelopment of the registry was undertaken in 2008 with the endorsement of all Australian Health Ministers and joint funding by all jurisdictions under the National Blood Agreement, through the National Blood Authority (NBA).
An ABDR Steering Committee with representatives from Australian Haemophilia Centre Director’s Organization (AHCDO), Haemophilia Foundation Australia (HFA), NBA and funding jurisdictions has oversight of the ABDR.
Other authorised users have access to limited, depersonalized and/or summary information where all identifying information is removed to protect individual privacy.
Some of the aggregated depersonalized information may assist HFA in planning its activities and services for the bleeding disorders community. Some depersonalized information is also used by the NBA to make sure there is enough clotting factor available for treatment.
For more information on the ABDR, visit:
- the ABDR page on the National Blood Authority web site
- the AHCDO website
- Or download the Patient Pamphlet