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.
Different centres currently manage the same disease in slightly different ways, and we don’t know which strategies work best for patients.
The registry will tell us all of these things. It will also:

• Provide an important framework for future research to improve patient care
• Be used to help to plan health care services for the future
• Bring together a network of Australian health care professionals with a special interest in haemoglobinopathies, for sharing ideas.

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

E: hbr@monash.edu

How will patients participate?
Patients with a clinically significant haemoglobinopathy* will be identified by their treating clinician. The clinician will ask the patient to participate before entering their details into the secure website. This will usually occur in the setting of an outpatient appointment, or during a hospital admission. Patients can decline to participate at any time, even after their details have been entered, without any consequences for their treatment.

*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.

monash.edu/medicine/sphpm/registries/hbr

Transfusion Research Unit – Current research registries

www.monash.edu/medicine/sphpm/depts-centres-units/transfusionresearch