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Action Plan Community Survey

We are wanting to create new resources for individuals, young people and families impacted by childhood-onset heart disease. 

If you are impacted you can help by completing a survey to tell us how you like to receive health information and the type of information you seek.

There are two surveys - one for the broader community and one specifically designed for our young people 12-25 years.

Please ONLY complete the survey that best describes you. For example, if you have a young person with childhood heart disease in your household please encourage them to take the young people's survey and you complete the community survey.

Each survey will take between 15-20 min. 

Surveys will close Monday 24 August 2020.

Community Survey:

Complete this survey if you are an: 

• Adults who have a childhood heart disease 
• Parents, relatives or carers of someone with a childhood heart disease (including siblings, grandparents, aunts, uncles, cousins) 
• Spouses or partners of someone with a childhood heart disease 
• Bereaved parents, relatives or carers who have lost someone to childhood heart disease. 

Please download the Information Sheet for answers to any questions you may have.

To start the survey click here

DO NOT complete this survey if you are between the ages of 12-25 years.


Young People Survey:  12-25 years old with a heart condition.

We would like to better engage with young people who have childhood heart disease and see how we can assist during the transition process as they transfer to ongoing adult care.

To improve this process for teens and young people, we would love your feedback to find out more about your needs.

When completing the survey you may ask a parent or carer for help to understand a question, however you should submit each response from your own perspective.

If you are younger than 15, you will need permission from a parent or guardian to do this survey.

Please download the Information Sheet for answers to any questions you may have and information for parents/guardians.

To start the survey click here: 


Parents please don't complete this survey on behalf of yourself or your child, we have one specific to your experience here.


Note: For the purpose of the survey and the information provided here, when we refer to childhood heart disease it includes congenital heart disease and heart disease acquired during childhood.