Do you have home therapy for a bleeding disorder?
Are you interested in having a standard national smartphone 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 secure web site so that they will work best for you!
THIS SURVEY IS NOW CLOSED
Complete the survey and enter the draws for great prizes!!
First draw – $100 gift voucher (valid Australia-wide) – enter by midnight Sunday 28 July 2013
Second draw – $100 gift voucher (valid Australia-wide) – enter by midnight Sunday 18 August 2013
Click on the link at the end of the survey to enter the draw.
What is MyABDR?
MyABDR is a collaborative project between Haemophilia Foundation Australia (HFA), the Australian Haemophilia Centre Directors’ Organisation (AHCDO) and the National Blood Authority (NBA) to develop an app for a smartphone and a secure web site for people with bleeding disorders or parents/caregivers to record bleeds and home treatments. This project will also have considerable input from the specialist haemophilia nurse, data manager, physiotherapist and social worker and counsellor groups.
The app and secure web site will link directly to the Australian Bleeding Disorders Registry (ABDR) which is the system used nationally by Haemophilia Centres for clinical care of their patients.
What’s the point of the new app and secure web site?
- To make it quick and easy for people to record their bleeds or treatments and update their contact details
- Haemophilia Centres can keep track of what is happening for their patients 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
- It will facilitate notifications about product batches, so people will be able to receive information about products or recalls
- De-identified information about the amount of product being used can help the government to stocktake and plan for purchase of future supplies
- The pooled de-identified information can be used nationally by specialist clinicians 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:
- Secure – you will need to login on your phone or computer with a personal password and the ABDR database is protected with the highest level of security
- Private – identifying patient information will only be 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.
Prize entry information
Information in the MyABDR Community Survey Prize Entry form will only be used for the prize draw and will not be added to any databases. The information will not be passed on to a third party. The entries will be destroyed when the prize draw has been completed. Only one entry may be submitted per survey.
Prizes will be drawn on:
DRAW 1 – 30 July 2013
DRAW 2 – 20 August 2013.
Winners will be announced on the HFA web site. There will be an option to have name witheld.