Patient Information
Participation in our Registries
Participation in any of the ANZORRG registries is entirely voluntary. Information specific to each registry is outlined in the sections below.
Participation in the registry helps us better understand how organ replacement therapies are delivered across Australia and New Zealand, and supports ongoing efforts to improve outcomes for people receiving these treatments. Registry data supports:
- identifying strengths and gaps in current clinical services,
- providing meaningful feedback to clinicians, health services, government, and researchers, and
- informing changes that promote higher quality of care and improved health outcomes.
What participation involves will differ depending on the registry, but usually includes the collection of information about you and your health from the service you attended. In some cases, you may also be invited to complete surveys or take part in additional research studies. These activities are always optional.
All information collected is stored securely, handled confidentially, and used responsibly to drive improvements in care. You will never be personally identified in reports, publications, or presentations.
Frequently Asked Questions
Your hospital or healthcare service provides information to the relevant registry within ANZORRG. This includes your name, postcode, date of birth, sex, cultural background, health conditions, and details about the organ replacement therapy you receive – such as dialysis, transplant, or tissue/eye graft.
This information is collected when you begin treatment or receive a transplant, and is updated regularly.
We do not collect personal details like your address, phone number, Medicare number, private health insurance information, or non-medical details such as your job or income.
ANZORRG follows strict Australian and Aotearoa New Zealand privacy laws to protect your personal information. We have strong security systems in place to keep your data safe and confidential. Our computer systems are protected, and any information shared with us is transferred securely.
We take privacy seriously and work hard to make sure your information is handled with care and respect.
You can ask to see your own information or request copies of the reports produced by ANZORRG registries at any time.
If you have questions or concerns about your information, you can speak with your healthcare team. You’re also welcome to contact ANZORRG directly by phone (+61 8 8128 4758) or email (anzdata@anzdata.org.au).