Ann Wilson is the ABDR Project Officer
Although bleeding disorders and their treatment have been widely studied, little has been published from data collected about people with bleeding disorders in Australia.
The ABDR (Australian Bleeding Disorders Registry) is an online database designed to collect all medical and health information about the normal, routine and emergency treatment of all people with bleeding disorders nationwide. As such, it offers the unique opportunity to study bleeding disorders in Australia.
You may recall completing an ABDR privacy consent form recently. Along with ethics committee approval from your hospital, these are important steps for AHCDO (Australian Haemophilia Centre Directors’ Organisation) to begin studying ABDR data. With patient consent and ethics approval – and following the strict rules of patient data access for the ABDR – members of AHCDO will now explore the data to better understand bleeding disorders and how they are treated, and to find ways to improve patient wellbeing and health outcomes. In this study, the data will be de-identified (so no patient can be identified) and analysed to answer questions such as:
1. What types of people are affected by bleeding disorders?
2. What is the national rate of bleeding disorders?
3. What is the most effective treatment for certain types of bleeding disorders?
4. What are the risks factors to developing inhibitors to treatment?
Through this research we hope to improve the wellbeing and health care of people with bleeding disorders.
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