Inform patients about the Register

Role of healthcare providers

It’s important that healthcare providers inform patients 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 their care, and that patients can opt out at any time.

Steps for healthcare providers

• Discuss the Register with patients including:
  • what the Register is
  • how it supports patient follow-up care
  • what information is collected and what happens to that information
  • that patients can opt out of the Register at any time.
• Provide information in a culturally appropriate way, such as in an environment in which the person feels comfortable and where appropriate in collaboration with cultural support staff such as Aboriginal and Torres Strait Islander health staff.
• Use the Register factsheet for patients (PDF 174 kB) when speaking with patients.

Opting out and rejoining the Register

• A patient can opt out and rejoin the Register at any time by:
  • completing the forms
    • Opt out of the RHD Register (PDF 762 kB)
    • Rejoin the RHD Register (PDF 1035 kB)
  • contacting the Register directly by telephone 1300 135 854 or email
  • asking their healthcare provider to submit a request on their behalf.

When a patient opts out of the Register

• The Register will stop recording and sharing their information.
• Reminders to healthcare providers will cease.
• 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

• Information may be missing from the time the patient had 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.
• Reminders to healthcare providers will recommence.