ACSQHC-ARCR-397

The Aplastic Anaemia Registry was established in 2012, through a collaboration between the Transfusion Research Unit in Monash University’s School of Public Health and Preventive Medicine and partner hospitals, clinicians and patients.

Registry operations are overseen by a multidisciplinary national steering committee and is supported by the Maddie Riewoldt’s Vision Foundation.

The Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry is a clinical quality registry (self-reported) collecting health information on adult and paediatric patients diagnosed with a bone marrow failure syndrome. Data collection is performed at baseline following diagnosis at 6-months and then annually and collects information on the following:

• Health at diagnosis, patient demographics, co-morbidities and performance status
• Clinical presentation and disease characteristics (disease type, severity and laboratory diagnostic data)
• Therapy decisions, (drug/dose of treatment, number of lines of therapy, reasons for alteration or discontinuation)
• Outcomes (such as complications of disease and therapies and survival).

There are currently 40 Australian hospitals participating in the registry with over 360 participants registered since the first patient data was entered in 2013. The registry provides research infrastructure for the DIAAMOND clinical trial, IBMDx study and the Australian Marrow Failure Biobank.