Haemoglobinopathy Registry (HbR)

Registry custodian:Professor Erica Wood
Head, Transfusion Research Unit
Registry contact:Professor Erica Wood
Email: hbr@monash.edu
Phone: 1800 811 326
Clinical lead: Professor Joy Ho, Haematology
Purpose / aims: The aims of the HbR are to:
  • monitor trends in incidence and survival
  • monitor access to care
  • 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: Demographics, diagnosis, laboratory, clinical and imaging results, complications of disease and therapy, and clinical outcomes
Funding sources: Industry partners