Transfusion Research Unit, Monash University, sphpm.transfusion@monash.edu
The Haemoglobinopathy Registry collects data about patients with genetic disorders of haemoglobin (haemoglobinopathies), including thalassaemias and sickle cell disease. Many of these patients are dependent on regular blood transfusions and the disorders can have significant personal and economic impact. Lack of data on the prevalence of haemoglobinopathies and the overall disease burden in Australia makes comparisons of interventions and audits of outcomes between centres nationally and with international centres, difficult. The Haemoglobinopathy Registry will address this lack of data, and will provide a foundation for future research. The aims of the Haemoglobinopathy Registry 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
Reporting via research publications only
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New South Wales
- The Children's Hospital at Westmead
- John Hunter Children's Hospital
- Liverpool Hospital
- Prince of Wales Hospital
- Royal Prince Alfred Hospital
Queensland
- Mater Adult Hospital
- Queensland Children's Hospital
South Australia
- Royal Adelaide Hospital
- Women's and Children's Hospital
Victoria
- Monash Medical Centre
- Royal Children's Hospital
- Royal Melbourne Hospital
Western Australia
- Perth Children's Hospital