Healthy living

WA Rheumatic Heart Disease Register

What is the WA Rheumatic Heart Disease Register?

The WA Rheumatic Heart Disease Register (the WA RHD Register) is a confidential database that collects information on people with acute rheumatic fever (ARF) and rheumatic heart disease (RHD) in WA.

The register collects and records different information, including:

  • copies of tests and scans (for example, echocardiogram)
  • history of penicillin injections
  • letters from specialists providing expert opinion on treatment and progress
  • other information related to a person’s ARF or RHD history.

The WA RHD Register was established in 2009. RHD registers now operate in Queensland, Northern Territory, South Australia and WA.

Why do we have the WA RHD Register?

Research shows some of the highest rates of ARF and RHD in the world are found in Aboriginal populations living in rural and remote parts of Australia, particularly across the central and northern regions of the country.

The first rheumatic heart disease register (RHD) in Australia was established in 1997 in the Northern Territory and was effective in reducing the recurrence of acute rheumatic fever (ARF).

Register based RHD programs have shown that an organised approach to monitoring people with ARF and RHD is the most efficient way to reduce the effect of these illnesses and prevent long-term heart damage.

The WA RHD Register provides data for planning, monitoring and evaluating the program.

The data helps to improve our understanding of ARF and RHD, its treatment and health outcomes for people with or at risk of developing RHD.

How does the WA RHD Register help me?

The WA RHD Register helps to improve your follow up care, which can mean better health outcomes for you.

The register will help your doctor or healthcare service by reminding them of all appointments that you need to attend, including appointments for treatments, tests and specialist review. This includes appointments with dentists.

This information is available for you to share with other healthcare providers if you need to visit a different health site in WA or go interstate.

The WA RHD Register plays an important role in providing education to patients and family members with ARF and RHD and healthcare professionals.

How do I join the WA RHD Register?

Your doctor or healthcare service staff can arrange for you to complete a consent form which will be forwarded to the WA RHD register.

After this, a WA RHD Register staff member will contact your health care service and request information regarding your treatment of ARF and RHD.

What information is collected?

The register collects and records all information related to your diagnosis and management of ARF and RHD. This includes:

  • name
  • date of birth
  • address
  • Medicare number
  • healthcare service contact details
  • test results
  • dates you receive penicillin injections
  • letters from specialist doctors
  • echocardiogram (heart ultrasound) results.

Who can access my information?

Only you, your healthcare provider and the specialists involved with your ongoing care have access to your information.

How can I update my details?

Tell your doctor or healthcare service of any changes to your contact details and they will forward them to the WA RHD Register.

If you are moving or travelling for a period of time and you want to see a different doctor or healthcare service, you can either inform you current doctor or health clinic or otherwise contact the WA RHD Register.

Where to get help

  • See your doctor, nurse or aboriginal health worker
  • Visit a GP after hours
  • Ring healthdirect Australia on 1800 022 222
  • WA RHD Register and Control Program
    Phone: 1300 622 745 (local call rates from land line only)
    Email the register
    Postal address: PO Box 525, Broome WA 6725

Acknowledgements

WA Rheumatic Heart Disease Register and Control Program


This publication is provided for education and information purposes only. It is not a substitute for professional medical care. Information about a therapy, service, product or treatment does not imply endorsement and is not intended to replace advice from your healthcare professional. Readers should note that over time currency and completeness of the information may change. All users should seek advice from a qualified healthcare professional for a diagnosis and answers to their medical questions.

Link to HealthyWA Facebook page