Changes to the Queensland RHD Register

Patients diagnosed with acute rheumatic fever (ARF) and/or rheumatic heart disease (RHD) who are automatically added to the Register can choose to opt out and rejoin at any time. This approach supports culturally safe, ethical, and legally compliant data practices while continuing to support the regular long term management of people living with ARF and RHD.

How does this impact healthcare providers?
It’s important that healthcare providers talk to patients and families about the Register. This includes explaining that a patient diagnosed with ARF and/or RHD is automatically added to the Register, what the Register is, how it supports patient care and that patients can opt out and rejoin at any time.

The Queensland RHD Register webpage includes information to assist healthcare providers to inform patients about the Register.  

Important consideration
A patient can choose to continue clinical management for their condition irrespective of their inclusion on the Register. This decision should be discussed between the patient and their healthcare provider.

Opting out and rejoining the Register
A patient can opt out and rejoin the Register at any time by:

• Completing the form:
  • Opt out of the RHD Register
  • Rejoin the RHD Register
• asking their healthcare provider to submit a request on their behalf.
• contacting the Register directly by telephone 1300 135 854 or arfrhdregister@health.qld.gov.au 

When a patient opts out or rejoins the Register

• If a patient opts out, the Register will stop recording and sharing their information (including to The Viewer) and will no longer send reminders to their healthcare providers. The Register team notifies the patient's healthcare provider that their patient has opted out and to stop sending information to the Register.

• If a patient rejoins the Register, some of their information may be missing from the time they opted out and the Register team may request certain information to complete a patient record. ​ The Register will recommence recording and sharing their information (including to The Viewer) and will recommence sending reminders to their healthcare providers.

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More information about the Register is available on the Queensland RHD Register webpage