News

MyABDR community survey

Fri 26 Jul 2013

Do you have home therapy for a bleeding disorder?

Are you interested in a standard national app or secure web site to record your bleeds and treatments?

If so, we need your help with this survey to tailor the MyABDR app and web site so that they will work best for you!

Complete the survey and enter the draws to win great prizes!!

First draw – $100 gift voucher (valid Australia-wide) – enter by Sunday 28 July 2013

Second draw – $100 gift voucher (valid Australia-wide) – enter by Sunday 18 August 2013

Go to the survey.

What is MyABDR?

MyABDR is a collaborative project between HFA, the Australian Haemophilia Centre Directors’ Organisation (AHCDO) and the National Blood Authority (NBA) to develop an app and a secure web site for people with bleeding disorders or parents to record bleeds and home treatments. MyABDR development will also have a lot of input from haemophilia nurses, data manager, physiotherapists and social workers and counsellors.

The app and secure web site will link directly to the Australian Bleeding Disorders Registry (ABDR) which is the online system used nationally by Haemophilia Centres to manage care of their patients.

What’s the point of the new app and secure web site?

• To make it quick and easy for you to record bleeds or treatments and update your contact details.
• Haemophilia Centres can keep track of what is happening for you at home to see if there are any problems or treatment plans need adjusting.
• Haemophilia Centres won’t need to re-enter or upload patient diaries into the ABDR.
• The system will be able to let you know information about product batches or recalls.
• It can collect statistics about the amount of product being used to help the government to stocktake and plan for purchasing future supplies (but the government will not know who is using what product).
• The pooled statistics can be used nationally by specialist doctors and researchers to see trends and patterns for bleeds and treatments – very important for improving treatment and care in rare diseases like bleeding disorders!

The MyABDR app and secure web site will be:

• Optional
• Secure – you will need to login on your phone or computer with a personal password and the ABDR system is protected with the highest level of security
• Private – who can see information in the ABDR that identifies you? Only your Haemophilia Centre and specially selected NBA technical support/helpdesk staff authorised by the ABDR Steering Committee so that they can support and maintain the ABDR.

More information about MyABDR.

Go to the survey.

Last Reviewed: 26/07/2013