What is the Australian Bleeding Disorders Registry

The ABDR is a clinical database and business system designed for use by clinicians, nurses, physiotherapists, social workers and data managers responsible for the care and treatment of people with bleeding disorders. It includes four main components: patient details, clinical information, a record of patient interactions, and clotting factor product ordering and usage. It has a reporting module and advanced search facility to assist with the efficient management of clinical services in Haemophilia Treatment Centres (HTC).

The ABDR is established with the endorsement of all Australian Health Ministers and is jointly funded by all jurisdictions under the National Blood Agreement, through the National Blood Authority (NBA). An ABDR Steering Committee made up of representatives from the Australian AHCDO, the Haemophilia Foundation Australia (HFA), NBA and funding jurisdictions is responsible for oversight of the ABDR. The NBA, AHCDO and HTCs all have a role in the administration of the ABDR. Technical operation and support services for ABDR are provided by Genix Ventures under contract to the NBA.

The patient information pamphet can be downloaded here


How to access deidentified data from the ABDR for research purposes

You may request access to de-identified data from the ABDR for research purposes by making a written submission to the ABDR NBA Secretariat indicating the data required and the purpose for which it will be used. If the request is from an external third party it will be passed to the AHCDO Executive Committee for initial approval. The ABDR Steering Committee will then consider the request. If your research project requires HREC approval you must also include confirmation that this has been obtained. If the request is reasonable the ABDR Steering Committee will aprove the request and it will be sent to the NBA for verification and ratification. You will be advised of the outcome in due course. If the request is unreasonable the NBA Secretariat will advise you accordingly

Any publication of data should be acompanied by an acknowledgement of the ABDR.


Important Information for Clinicians

Australian governments have funded the redevelopment of the 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 NBA, in collaboration with the 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.

You may down load more information here

ABDR Web Site


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