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

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

Professor Frank Firkin
Haematologist, St Vincent’s Hospital, Melbourne

Professor Zoe McQuilten
Deputy Head, Transfusion Research Unit

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

Registry contact:Vanessa Fox, Registry Manager
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
Website:aaregistry.org.au