Friday, 16 October 2015

Maddie Riewoldt’s vision grant guarantees the ongoing operation of the world’s only national Aplastic Anaemia Register

The Aplastic Anaemia Registry (AAR) coordinated here at SPHPM has received an initial research grant of $80,000 from the Maddie Riewoldt’s Vision (MRV) foundation to support the operation of the world’s first and only national aplastic anaemia registry. 

AAR is a project of the Transfusion Outcomes Research Collaborative (TORC), which is a partnership between the Transfusion Research Unit at SPHPM’s Department of Epidemiology and Preventive Medicine (DEPM), and the Australian Red Cross Blood Service. The registry collects vital information on the incidence and treatment outcomes on newly diagnosed patients with aplastic anaemia.

This is a significant milestone in evaluating almost every diagnosis of aplastic anaemia in Australia, which currently affects 140 Australians each year, and the funding will support researchers to share data across all treatment facilities nationally.

In addition, a potential further grant of $160,000 over the next three years has been approved to support the AAR.

 “The funding from MRV is very important for this poorly understood condition,” said Professor
Frank Firkin, Chair of the AAR Steering Committee.

“The operation of this register will enable us to identify treatment practices with superior efficacy and share them with all treating centres across the country to help the Australians living with this chronic and complex disorder that has high morbidity and mortality rates.”

AAR Principal Investigator and Consultant Haematologist, Associate Professor Erica Wood from SPHPM, oversees the registry and says that 46 people have already agreed to participate at 39 hospitals across Australia.

“With a rare condition like aplastic anaemia, it’s so important that everyone who is eligible to participate does so – every person’s experience provides very valuable information to help paint a picture of the condition across Australia,” Dr Wood said.

“We’re so grateful to Maddie Riewoldt’s Vision for their efforts in raising awareness and essential funds to support our work.

“We’re excited to be the first recipients of funding raised from the community. This support will make all the difference in keeping the registry open and active, and allowing us to continue our research into the causes and best treatments for aplastic anaemia,” Dr Wood said.

MRV’s CEO Mrs Nicky Long is thrilled to support the burgeoning national cooperation in this field of research.

“As a young organisation, with a specific purpose and mandate, we are pleased to be able to step in and support the AAR.

“The collaborative approach that underpins the AAR very much reflects the strategy of MRV and our attitude to research funding,” she said.

It is hoped the grant will assist in the ongoing operation of the AAR and will generate valuable information for improving the treatment of the condition and into the future its functions can expand to collecting correlative samples.

The Transfusion Research Unit at SPHPM operates a number of other registries and clinical research projects for important blood disorders, including aplastic anaemia.

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