The Australian Bleeding Disorders Registry (ABDR) is a clinical registry for patients in Australia with bleeding disorders. It is used on a daily basis by clinicians in all Australian haemophilia treatment centres (HTCs) to assist in managing the treatment of people with bleeding disorders and 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. The image below is a screenshot from ABDR demonstrating the clinical diagnosis page (test data only). Click on image to enlarge.
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FIGURE: Screenshot of ABDR clinical diagnosis page.
First developed in 1995, the current fourth generation system was launched by the National Blood Authority (NBA) in August 2012. ABDR is managed in collaboration with the Australian Haemophilia Centre Directors' Organisation (AHCDO), Haemophilia Foundation Australia and all Australian governments and is overseen by a Steering Committee, chaired by Dr John Rowell from the Queensland Haemophilia Centre.
What about patient privacy?
Only the health care team, support staff involved in providing medical services and authorised ABDR Support Officers have access to the personal information of their patients. Other authorised users only have access to limited, de-personalised and/or summary information where all identifying information is removed to protect patient privacy.
- ABDR Patient Pamphlet (pdf) (1.3 MB)
Adding new patients to ABDR
Doctors need to register their patients by completing one of the ABDR Patient Registration Forms listed below and faxing it to the nearest Haemophilia Treatment Centre or Bleeding Disorders Clinic where it will be entered by the respective Data Manager.
Accessing ABDR
If you are already a user of ABDR, simply click the BloodPortal Login link at the top of this page and then select ABDR once you are logged into the BloodPortal.
If you work in a haemophilia treatment centre and don’t yet have access to ABDR, you should talk to your centre’s Director. You can then apply online for access by first creating a BloodPortal account and then apply for access to ABDR by selecting the ABDR icon in BloodPortal and completing the online form. Once your access request is approved by your haemophilia treatment centre director and the NBA, you will be notified by email.
If you are being treated through a haemophilia treatment centre and wish to view your record in ABDR, you should discuss this with your treating clinician.
ABDR Support Materials
- Help Guide (pdf) (733 KB)
- Help Guide (docx) (772 KB)
- Quick Reference Guide (pdf) (863 KB)
- Quick Reference Guide (doc) (372 KB)
- Site Map (pdf) (166 KB)
- Site Map (jpg) (115 KB)
- Haemophilia Treatment Centre Frequently Asked Questions (pdf) (147 KB)
- Haemophilia Treatment Centre Frequently Asked Questions (docx) (96 KB)
ABDR Newsletter
- ABDR Newsletter July 2012 (pdf) (272 KB)
- ABDR Newsletter July 2012 (docx) (1.9 MB)
- ABDR Newsletter June 2012 (pdf) (579 KB)
- ABDR Newsletter June 2012 (docx) (3.2 MB)
- ABDR Newsletter December 2011 (pdf) (338 KB)
- ABDR Newsletter December 2011 (doc) (2 MB)
ABDR Data
Aggregated de-identified data from ABDR and other ICT systems operated by the NBA is reported in the Annual ABDR Reports.
This includes similar reports to the below haemophilia treatment centre dashboard report. Click on image to enlarge.
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For more information
For more information about ABDR visit the AHCDO website or contact AHCDO by:
- Email info [at] ahcdo [dot] org [dot] au (subject: ABDR%20Enquiry) or
- Call (03) 9885 1777.
For ABDR user support contact the ABDR Support Team at the NBA by:
- Email support [at] blood [dot] gov [dot] au (subject: ABDR%20Enquiry) or
- Call 13 000 BLOOD (13 000 25663). Note: ABDR Support is available 24/7.
