Haemoglobinopathy Registry (HbR)

Academic Lead:Professor Erica Wood
Head, Transfusion Research Unit
Clinical Lead: Professor Joy Ho
Haematology, Royal Prince Alfred Hospital, Sydney
Registry contact:Melissa Chee, Research Officer
Email: hbr@monash.edu
Phone: 1800 811 326
Purpose / aims: The aims of the HbR are to:
  • explore variation in practice, process and outcome measures
  • explore the factors that influence outcomes including survival and quality of life
  • benchmark outcomes nationally and internationally
  • act as a resource for clinical trials
  • inform and inspire future hypothesis-driven research in this area
Population captured: Patients with a diagnosis of sickle cell anaemia, ß-thalassemia major and other haemoglobinopathies
Outcomes collected: Diagnosis, laboratory, clinical and imaging results, complications of disease and therapy, and clinical outcomes
Year established: 2013
Funding source: Industry partners and (in past) Thalassaemia and Sickle Cell Australia, Thalassaemia Society of NSW
Unit website:monash.edu/medicine/sphpm/units/transfusionresearch