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General information and FAQ

Version 1.2, 17 May 2024

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What is the CHAANZ Registry?

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CHAANZ: Congenital Heart Alliance of Australia and New Zealand. The CHAANZ Congenital Heart Disease (CHD) Registry is a database collecting health information on Australians and New Zealanders with a CHD diagnosis (a structural heart problem that is there from birth). We want to collect information on people with CHD to understand more about how this affects their health throughout life. At Starship Child Health, Te Toka Tumai Auckland, we are also collecting information on children we see with other structural heart problems.

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Do I have to be involved?

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Participation in this research is voluntary. If you decide you do not want to take part, you do not have to, and you can choose to “Opt-out”.

 

What does "Opt-out" mean? 

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You will be automatically included in the Registry unless you tell the study team you do not want to participate (opt-out). You can opt-out at any time in the future by letting us know. You will receive the best possible care from your medical team whether or not you take part.

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What is the purpose of the Registry?

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The Registry aims to combine information from the large paediatric and congenital heart units from Australia and New Zealand so we can better understand our patients’ health experiences and needs throughout life. In Aotearoa, we are collecting information on patients who receive care at Starship and Auckland Hospitals.

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Why should I be involved?

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There are no immediate benefits to a person participating (or their family/whānau/ʻAiga), but by collecting information on large numbers of people we aim to understand the needs of this community much better & advocate for those needs to deliver better care.

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Will it cost me any money?

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There are no costs associated with participating in the Registry.

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What if someone does something bad with my health records or personal details?

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Researchers work under very strict privacy rules to minimise any risks to you. The Registry is hosted on a secure platform, and only a few authorised individuals will be able to view your individual information. No report will be published that contains any details that could be linked to you.

 

What do I have to do if I am happy for me or my child to participate?

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Nothing extra. Information that has been collected as part of your/your child’s clinical care from the assessment and tests today will be entered into the study database. Participating in the Registry will not require you to have any additional procedures or tests.

 

If you were born with your condition (congenital), your information will be sent to a database in Australia. If you developed your condition after birth (acquired), your information will be saved on a database within Starship Hospital.

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If I don’t want to participate (or want my child to participate), how do I opt-out?

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A card is attached to this leaflet which you can complete and hand to your doctor or nurse or the receptionist. Alternatively, you can scan the QR code on the back or visit the website and complete the opt-out form. Or you can simply tell our team today that you don’t want your/your child’s health information included and they will complete the ‘opt-out’ for you. If you are not happy to take part this will have no impact at all on the care we give you today.

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When you visit our unit next time you may be given this information again but the ‘opt-out’ you recorded will still be valid – we will save that information on the research.

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How do I know this is safe? 

 

All research in Australia & New Zealand involving humans is reviewed by an independent group of people, called a Health and Disability Ethics Committee (HDEC), who check that studies meet established ethical standards. This committee exists to protect your welfare and rights if you choose to participate. This study has been approved in NZ by the Northern A Health and Disability Ethics Committee (2023 FULL 12788)

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Who can I ask for more information?

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Your heart doctor or nurse specialist is a good person to speak to. If you have any questions or concerns or at any stage, you can contact:

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If you want to talk to someone who isn’t involved with the study, you can contact an independent health and disability advocate on:

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If you require Māori cultural support, contact the administrator for He Kamaka Waiora (Māori Health Team) by telephoning 09 307 4949 ext 29200. State title of the study (CHAANZ) and name of primary investigator (Dr Clare O’Donnell).

If you do not want your information to be collected for the Registry, please complete the OPT OUT form.

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