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The AAR supports Rare Disease Day
The AAR acknowledges the important contributions of people living with aplastic anaemia and other bone marrow failure syndromes, their families and their treating clinical teams to the registry and the DIAAMOND clinical trial. The registry data on these rare conditions are already proving very valuable in providing an overview of the health issues experienced by our Australian patients, and will contribute to finding new treatments and potential cures.
Find out more about the Rare Disease Day and become a friend.
Over 300 patients entered into the Registry!
We extend our thanks and appreciation to patients, hospital staff and researchers whose ongoing contribution to a national complete dataset on aplastic anaemia and other bone marrow failure disorders will further advance and support scientific studies of these rare diseases.
The DIAAMOND Trial
The DIAAMOND clinical trial is open to recruitment at 12 sites and has recruited 71 patients since opening in October 2019.
For more information about the trial, please refer to the DIAAMOND Trial page or contact us via phone or email.
If you are a patient and are interested in participating in the DIAAMOND trial, please speak to your treating clinician.
Who we are
The Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry (AAR) is a clinical quality registry that collects health information on patients diagnosed with aplastic anaemia and inherited bone marrow failure syndromes in Australia. AAR is managed by Monash University’s School of Public Health and Preventive Medicine, through the Transfusion Research Unit, which manages a number of other clinical registries for important blood disorders.
Our purpose
The Registry collects data on the diagnosis, treatment and quality of life of patients diagnosed with aplastic anaemia and inherited bone marrow failure syndromes across Australia. The Registry is an important resource that aims to help patients with these diagnoses get the best possible care.
Why participate
Every patient is like a piece of a large jigsaw puzzle – each one gives us only a tiny amount of information, but together, they build a picture. The more pieces of the puzzle we can collect, the clearer the picture will be, and the greater the benefit to all patients. Each patient can make an important contribution to this research.
The AAR receives funding from Maddie Riewoldt’s Vision.
