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, Senior 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