Australian Bleeding Disorders Registry

The Australian Bleeding Disorders Registry (ABDR) is a database used to collect information on bleeding disorders. It supports staff in Haemophilia Treatment Centres (HTCs) to:

  • manage how they treat bleeding disorders in patients
  • understand bleeding disorder rates in Australia.

It also gives governments the information they need to manage Australia's blood product supply.

When you visit a HTC for the first time, staff may ask to save your details in the ABDR.

With your permission, staff will add a profile to the ABDR. Then you can add information about your treatment through the MyABDR app.

Learn more about the ABDR.

MyABDR app and website

MyABDR is a free and secure way for you to record information in the ABDR for yourself or a person in your care.

Through MyABDR, you can quickly and easily:

  • record treatments and bleeds
  • manage treatment product stock
  • view your treatment plan
  • get reports of treatment and bleed histories (website only)
  • share information with your HTC
  • update your personal and contact details
  • order patient cards.

You'll get information through the app about products and recalls.

If you're a parent or caregiver to multiple patients, you can switch between patient profiles in MyABDR.

MyABDR is simple to use. It was designed with input from:

  • people with bleeding disorders
  • parents, carers and health professionals who care for people with bleeding disorders.

Getting access to MyABDR

It takes less than 2 minutes to register for MyABDR.

On the MyABDR website(Opens in a new tab/window) you can:

  • register and set up your profile
  • find more information about using MyABDR.

You can also download the MyABDR app for iPhone(Opens in a new tab/window) or for Android(Opens in a new tab/window).

Your HTC will need to approve your registration. Then you can start using MyABDR straight away.

Contact us if you'd like training on using MyABDR.

For support materials, go to MyABDR user tips.

Using MyABDR online

Treatments and bleeds

You can quickly and easily record a new treatment.

Record the product and quantity used when treating a bleed or using a prophylactic treatment.

If treating a bleed, you'll also record:

  • the kind of bleed
  • where the bleed is
  • a photo, if you want to.
     

A timer shows you how long it has been since you last treated yourself.

Stock of treatment product

You can also use MyABDR to keep track of your product inventory.

If you enter your product details, the app will alert you when a product is running low or about to expire.

Because MyABDR connects directly to the ABDR, your doctor will have this information too.

Staff at your HTC can view the information you add through MyABDR, but they can't edit it.

Record information offline

You can record bleeds and treatments in a treatment diary instead of through the app. Get a copy from your HTC or:

Privacy of your information

We collect and manage all patient information in line with:

You must give consent before your information is recorded.

Find out more in the ABDR privacy policy.

Giving consent for sharing your information

HTC staff must get your consent before adding your information to the ABDR.

Read about and record your consent using the ABDR/MyABDR privacy collection notice and consent form. You can also give your consent verbally, including over the phone.

There is a minimum amount of information HTC staff must add to your ABDR profile.

Only your healthcare team has access to your personal information through the ABDR. Other authorised users have access to limited information, which does not show your identity.

The information you add through MyABDR gives your healthcare team a record of your bleeds and treatments. They use this information to monitor and manage your treatment.

Find out more in the ABDR consent leaflet. 

MyABDR governance

MyABDR was developed in a partnership between:

We manage the MyABDR app as well as the ABDR.

Learn more about ABDR governance.

Get in touch

For MyABDR support, contact the Blood Operations Centre 24 hours a day, 7 days a week.

For other enquiries, email support@blood.gov.au.

Last updated: 27 Mar 2024

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