Why use MyABDR?
MyABDR makes life easier for you, your family and your Haemophilia Centre
- It makes it quick and easy for you and your family to record treatments and bleeds, stocktake and update contact details
- Your recorded treatment information will be at your fingertips - on your smartphone or your home computer.
- It will make record-keeping more efficient - Haemophilia Centres won’t need to re-enter or upload online patient diaries into the ABDR
MyABDR helps you and your Haemophilia Centre to manage your care
- Your Haemophilia Centre can keep track of what is happening for you or your family to see if there are any problems or if treatment plans need adjusting
- Statistics from the system can help specialist clinicians, researchers and advocates like Haemophilia Foundation Australia to study trends and patterns and work to improve treatment and care.
MyABDR works in with the national system to supply treatment product
- You will be able to receive information about products or recalls
- Statistics about the amount of product being used can help the government to stocktake and plan for purchase of future supplies
MyABDR will be around long-term.
MyABDR will be ongoing - it is part of the national ABDR system.
Features in MyABDR have been developed with the input of people with bleeding disorders. MyABDR development has also had input from the specialist haemophilia nurse, data manager, physiotherapist and social worker and counsellor groups.
What is the ABDR?
The Australian Bleeding Disorders Registry (ABDR) is the system used by Haemophilia Centres around Australia for the clinical care of their patients.
The MyABDR app and web site link directly to the ABDR.
MyABDR and the ABDR are overseen carefully by the ABDR Steering Committee. Its membership includes the Australian Haemophilia Centre Directors’ Organisation, the National Blood Authority, Haemophilia Foundation Australia and a representative of federal and state government. It deals with issues such as privacy, ethics, data accuracy and system development.
The MyABDR app and secure web site are:
- Optional – you do not have to use MyABDR. Talk to your Haemophilia Centre about options for recording that work best for you
- Secure - you will need to login on your smartphone or computer with a personal password. Both MyABDR and the ABDR are protected with the highest level of security
- Private - information that could identify you is only accessible in the ABDR by your Haemophilia Centre and specially selected NBA technical support/helpdesk staff authorised by the ABDR Steering Committee for the purposes of supporting and maintaining the ABDR.
More details on the controls to protect your privacy and security with MyABDR are available on the Data Governance page on the NBA web site.
For more information about MyABDR
Read about the background to the MyABDR project,
or contact Suzanne O’Callaghan at HFA on:
T: 1800 807 173 Toll free
Date last reviewed: 13th February 2014