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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.

Transfusion Research Unit participates in the MRV 2nd annual bone marrow failure syndromes symposium

The TRU team was well represented at the MRV Symposium, 27-29 May, with updates on the Aplastic Anaemia and Other Bone Marrow Failure Syndromes Registry (AAR) presented by Dr Lucy Fox, and an update on the DIAAMOND trial of avatrombopag for patients with severe aplastic anaemia presented by A/Prof Stephen Ting. Professor Melissa Southey provided an introduction to the new Australian Marrow Failure Biobank, which is in development through Biobanking Victoria and will link closely with the AAR. Prof Erica Wood chaired the session on aplastic anaemia, which featured a keynote presentation by Professor Neal Young from the NHLBI.

Over 250 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 55 patients since opening in October 2019.
For more information about the trial, please refer to the Clinical 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.

Partnerships and Funding

 

The AAR receives funding from Maddie Riewoldt’s Vision.