Aplastic Anaemia (AA) Registry

What is AA?

Aplastic Anaemia (AA) is a rare but serious disorder with a high morbidity and mortality rate.  It is characterised by a deficiency of all the formed elements of blood, representing a failure of the cell-generating capacity of bone marrow and it may be either acquired or inherited.  Available information indicates incidences of aplastic anaemia of 0.7-4.1 per million, 1.5 per million and 3-5 per million in Western populations.  The incidence in Asia is higher ranging from 4-7.4 per million. 

Currently there is no consensus regarding the incidence of aplastic anaemia in Australia. In addition, optimal management, impact of complications, useful clinical outcome data and standardisation of laboratory assessments are all lacking.  Aplastic Anaemia is a serious and costly condition to treat and data on epidemiology and management as practiced in Australia is minimal.  Lack of data hampers the design of clinical interventional studies, laboratory tests to improve diagnostics and the development of treatment guidelines. 

The AA Registry recruits patients through treating clinicians at multiple sites across Australia, collects data via a specifically designed web-based data collection form and aims to:

  • Better define the incidence, natural history and clinical outcome of AA.
  • Provide information on the range of therapeutic strategies being employed in the treatment of AA patients.
  • Explore factors influencing clinical outcomes.
  • Better define optimal management of AA patients.
  • Inform and inspire future research, and coordinate future national research.

If you would like more information or are interested in the participating in the AA Registry please click here