Australian Bleeding Disorders Registry

The Australian Bleeding Disorders Registry (ABDR) is a database used to collect information on bleeding disorders.

It includes information like:

• patient diagnosis
• treatment details
• hospital admissions and administrative information
• details on ordering, supply and use of clotting factor products.

Haemophilia Treatment Centre (HTC) staff use the ABDR to:

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

Accessing the ABDR

Access the ABDR through BloodPortal(Opens in a new tab/window).

If you work in a HTC and you don't have access yet, take these steps:

1. Talk to your HTC director about whether you should have access.
2. Create a BloodPortal account.
3. Select the ABDR icon in BloodPortal to request access.
4. Complete and submit the online form.

You'll get an email about the outcome of your application.

Patients can record data for the ABDR in the MyABDR app or website.

Adding a new patient to the ABDR

You should register patients who:

• have a bleeding disorder that is in the scope of the ABDR
• you're treating with a product that is funded under the national blood arrangements.

Bleeding disorders in scope are:

• haemophilia A and B (including with inhibitors)
• other factor deficiencies, including fibrinogen
• von Willebrand’s disease (vWD)
• platelet dysfunction
• acquired factor VIII inhibitor
  
• some vascular disorders.

The products that are funded are detailed on the National Product Price List.

Steps to register a new patient

Add new patients the first time they visit your clinic. At this first meeting, talk about the need to take the patient's information.

Registering a patient will not change your ability to manage their treatment.

1. Talk to the patient about registration and get verbal consent – use our verbal consent script as a guide.
   
2. Fill out the ABDR patient registration PDF form.
3. Make sure you fill out anything marked with an asterisk –¬†this is mandatory information.
4. Fax or email the completed form to your nearest HTC.
   

Find your nearest HTC(Opens in a new tab/window) through the Australian Haemophilia Centre Directors' Organisation website.

Patient privacy consent

Obtain the patient's consent before adding their information.

• Give patients a copy of the ABDR consent leaflet to help them understand consent.
• Record consent using either our consent form or recording verbal agreement, including over the phone.
• Record the patient's consent status in the patient's ABDR profile.

Adding patient minimum information

You can enter a patient's information, or they can do it through the MyABDR app after you've created a record.

You must provide this information:

• Full name and address details – so one unique record is created for each patient across Australia
• Date of birth – to calculate age cohorts
• Gender
• Diagnosis
• Severity
• Baseline factor level and date where relevant – this doesn't apply for vWD or platelet disorders, but is needed to assess international standards on severity classification
• Weight – to help understand dosing for clotting factors
• Treatment regimen – the product used, dosing and frequency of treatment; for example, add a comment if a patient's condition is mild and only treated on demand
• Attending physician and clinic/hospital – for follow-up and contact where needed

Giving this minimum amount of information helps with:

• creating ABDR patient identification cards
• accurate statistics on bleeding disorders
• supply planning
• estimating demand and forecasting
• future planning discussions about product ordering processes.

ABDR management

We administer and provide support to the ABDR and MyABDR app.

Managing information privacy

We collect and manage all patient information in line with:

• the Privacy Act 1988 (Cth)(Opens in a new tab/window)
• other rules under state and territory laws.

A patient must give their consent before their data is recorded. Read our full privacy policy.

Using ABDR data

Data in the ABDR helps us understand the demand for blood products. All patient information is de-identified.

We use this information to:

• manage blood product supply arrangements
• estimate product demand in the future.
   

Governance

To keep the ABDR up to date, we work with:

• Australian Haemophilia Centre Directors' Organisation (AHCDO)(Opens in a new tab/window)
• Haemophilia Foundation Australia(Opens in a new tab/window).

Read more about ABDR and MyABDR governance arrangements: 

Annual reports

We publish these reports on outcomes of the ABDR each year.

View older reports in the Trove web archive(Opens in a new tab/window).

Get in touch

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

• Phone: 13 000 25663 (13 000 BLOOD)

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