Australian Haemoglobinopathy Registry
The Australian Haemoglobinopathy Registry is a database for collecting medical information from patients with thalassaemia and sickle cell disease, over many years.
Why do we need an Australian Haemoglobinopathy Registry?
Australia has a significant number of affected people and a unique mix of cases, which is changing as migration patterns change, but we don’t know exactly how many people are affected, how severely they are affected, or how their health is changing over time.
People with haemoglobinopathies are living much longer than in the past, but little is known about their long-term complications and outcomes.
The Registry is the first step in a major project to ensure that all Australians with a haemoglobinopathy continue to receive the best possible care.
If you have questions about the project, please contact:
T: 1800 811 326
|Adding New Patients to Registry|
How will patients participate?
*The project has collected initial data from consented patients at Monash Medical Centre and Royal Prince Alfred Hospital. The remaining Stage 1 hospitals will come online in the coming months. In Stage 2, we will collect additional patient data, and will include more hospitals, and this will be undertaken over a period of years, so that we can monitor changes in people’s health and health care over time.
|Please see the website for more information|
Transfusion Research Unit – Current research registries