Haemoglobinopathy Registry (HbR)

Registry custodian:	Associate Professor Erica Wood Head, Transfusion Research Unit
Registry contact:	Associate 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
Website:	monash.edu/medicine/sphpm/units/transfusionresearch