Monash Health is pleased to be participating in the Haemoglobinopathy Registry (HbR), a national database set up to monitor the health of Australians living with thalassaemia, sickle cell disease and other disorders of haemoglobin, and the medical care they receive.
The registry is an important first step in a major project, which aims to ensure that all Australians living with a haemoglobinopathy receive the best possible medical care, now and in the years to come. The more people who participate in the registry, the better researchers will be able to assess the current situation and help plan for the future.
The Haemoglobinopathy Registry is managed by Monash University and has been approved by the Monash Health Research Ethics Committee. We have enclosed a registry information brochure, which describes what your participation means and how your privacy is protected. Participation is voluntary and will have no impact on the care you receive.
This registry is an ‘opt‐out’ registry. This means that unless you inform us within 14 days of the date of this letter that you do not wish to participate, we will begin entering your details into the database. But even if you miss this cut‐off, you can still withdraw from the registry at any time, by calling the HbR project officer on freecall 1800 811 326, emailing firstname.lastname@example.org, or sending in the ‘Decline to Participate’ slip attached to the information brochure.