Join the HbR Registry

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What is the Haemoglobin Blood Registry (HbR)?

The HbR is a group of patients diagnosed with a significant haemoglobinopathy (blood disorder), such as Thalassaemia or Sickle Cell Anaemia. These patients provide their healthcare information to inform future medical treatment.

Why should I be a part of the HbR?

If you have Thalassaemia or Sickle Cell Anaemia, joining the HbR means you can help inform the registry. Your healthcare information could provide valuable insight into whether people with haemoglobinopathies’ needs are being met. It could also lead to improvements in treatments and services.

How will my information be gathered?

When you join the HbR, your information, including demographic, treatment, and hospital visits, will be recorded. No individual information will be recorded, and no reported information will be able to identify you.

How will my information be treated?

Any information you provide to the registry will be stored on a secure database. Only authorised members of the registry will have access. Your information may be used to inform healthcare services and research.

Who runs the HbR?

A research team based out of Monash University runs the registry. The research team and university are independent bodies and are not influenced by government or pharmaceutical companies.

How do I join the HbR?

Talk to your treating clinician and inform them that you would like to be placed on the Haemoglobinopathy Registry.

For more information, you can contact the HbR here or view this information sheet.

Thalassaemia and Sickle Cell Australia (TASCA) is a support and advocacy organisation for Australians living with genetic haemoglobin conditions.

Join the HbR registry