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Join the HbR Registry

Join the HbR registry

What is the Haemoglobin Blood Registry (HbR)?

Established in 2013, the HbR was created to help answer a number of questions important for those living with haemoglobinopathies, including Thalassaemia and Sickle Cell Anaemia; and for those who care for and provide services for people living with a haemoglobinopathy.

Those living with a haemoglobinopathy can provide their data to the registry to help inform future medical treatments and improve care.

Why should I be a part of the HbR?

We still don’t know how many people in Australia are living with haemoglobinopathies such as 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. The recorded data is entered into the registry by authorised doctors, nurses, and research staff.

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. No individual information is disclosed. The HbR only reports aggregate data that does not and cannot identify patients. 

What information is collected?

Who runs the HbR?

The HbR collects information that is vital to providing resources for the best care of patients. It includes:

  • Patient demographics including ethnic heritage
  • Travel time to primary treatment centre
  • Diagnoses (eg beta thalassaemia, alpha thalassaemia, sickle cell disease)
  • Laboratory results
  • Transfusion requirements
  • Antibodies to transfused red blood cells
  • Iron chelation type and dose
  • Hospital admissions
  • Complications of condition and treatments

The HbR is a collaboration between patients, clinicians, hospitals and Monash University. 

Monash University is independent; they are not influenced by government or by pharmaceutical companies. They have developed very strong data security and patient privacy processes, and data analysis is performed by HbR staff with expert clinical input. 

How do I join the HbR?

Treating doctors invite patients to participate and provide them with an information brochure about the registry.  Participants can then decide if they want to join the registry and can opt out of the registry at any time in the future if they change their mind.

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