Stay or leave the Queensland RHD Register

Participation and your choices

The Queensland Rheumatic Heart Disease Register (Register) is a list of people who have acute rheumatic fever and rheumatic heart disease, also called ARF and RHD.

When you are diagnosed with ARF or RHD your details are automatically added to the Register. The Register helps healthcare providers coordinate your care and keep you healthy.

It is your choice if you want to leave (opt out) or rejoin the Register.

To opt out or rejoin the Register you, your parent or legal guardian, or your healthcare provider can:

What happens if you opt out?

  • The Register will stop recording any new information about you and sending reminders to your clinic.
  • Your healthcare provider will also be told you have opted out and to stop sending your information to the Register.
  • If you decide to rejoin later, there may be some gaps in your record from the time you were not on the Register.

Important: You can still receive care for ARF or RHD, even if you opt out of the Register.

Even if you opt out, you can still continue to receive treatment and heart tests. It’s a good idea to talk to your healthcare provider first, to make sure your care continues smoothly.

What happens if you rejoin?

  • Your health clinic will begin getting reminders when you are due for treatment or heart tests.
  • The Register will start recording your treatment, test results, and care from the date you rejoin.
  • Your healthcare provider will be able to see your Register record in The Viewer - a Queensland Health system that shows patient information.
  • If you had care while you were not on the Register, the Register team may contact your healthcare provider or check Queensland Health records (like if you visited a hospital or community clinic) to help fill in any missing information and keep your record up to date.

Who can opt a child out of the Register

  • Only a parent or legal guardian can ask for a child to be removed from the Register.
  • If you care for a child but are not their legal guardian, you can ask the child’s healthcare provider to make the request on your behalf.
  • A legal guardian is someone who, by law, has the same rights and responsibilities for a child as a parent.

Will opting out of the Queensland RHD Register remove me from other Registers?

No. Your request will only remove you from the Queensland RHD Register. If you are part of other health Registers, you will need to contact those teams directly.

Last updated: 29 September 2025