Aplastic Anaemia and other bone marrow failure syndromes Registry (AAR)

Academic Lead:Professor Erica Wood
Head, Transfusion Research Unit
Clinical Leads:

Associate Professor Zoe McQuilten
Deputy Head, Transfusion Research Unit

Dr Lucy Fox
Haematologist and Clinical Research Fellow, Transfusion Research Unit

Professor Frank Firkin
Haematologist, St Vincent’s Hospital, Melbourne (Chair, Steering Committee)

Registry Contact:Vanessa Fox, Senior Research Officer
Email: aar@monash.edu
Phone: 1800 811 326
Purpose / Aims:

The aims of the AAR are to:

  • better define the incidence, natural history and clinical outcome of aplastic anaemia (AA) and related diseases such as inherited Bone Marrow Failure Syndromes (IBMFS) in Australia
  • provide information on the range of therapeutic strategies being employed in the treatment of AA and IBMFS patients, including immunosuppressive therapy and haematopoietic stem cell transplantation and supportive care
  • document the specific genetic causes that underlie IBMFS and inherited predisposition to haematological malignancy in Australia
  • explore factors influencing clinical outcomes
  • investigate the relationship of PNH clones to progress of disease and response to therapy
  • better define optimal management of AA and IBMFS patients
  • inform and inspire future hypothesis-driven research in this area
Population Captured: Adult and paediatric patients suffering from aplastic anaemia and inherited bone marrow failure disorders.
Outcomes Collected: Diagnoses, laboratory and clinical results, clinical management including allogeneic haematopoietic stem cell transplantation, complications of disease and therapy, clinical outcomes; if death, cause of death.
Year established:2013
Funding Source: Maddie Riewoldt’s Vision