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National Congenital Heart Disease Survey

The National Congenital Heart Disease Online Survey is a voluntary online survey to help understand experiences and needs of people with congenital heart disease. The survey collects (self-reported) information from all people in Australia living with a previously diagnosed congenital heart condition, regardless of their current health status. The National Congenital Heart Disease Survey is the first step for gathering pivotal initial information to help provide a clearer picture of the entire congenital heart disease population in Australia and New Zealand.

The survey collects basic information such as name, date of birth, gender, contact details, ethnicity, country of birth and language spoken. It will also collect information about the heart condition, previous heart operations, the type and quality of care received, how the heart condition and treatment has influenced different aspects of life, such as school, work, relationships and emotional wellbeing, and any financial costs.  The survey will help gather new information on what it is like to live with congenital heart disease and how available care could be improved. Ultimately, the information in the survey will provide us with a better understanding of the experiences and needs of people with congenital heart disease from childhood to adulthood, and their parents or carers, to help plan for future care and services appropriately.

If you were born with a congenital heart condition or are the parent or carer of loved one who was born with a heart condition, you can consent online and agree to participate, provided you are aged 18 years or older. If you are under 18 years of age but can understand this information, you may participate, but we will also require your parent or guardian to consent with you. Participating in this survey is completely voluntary. The data collected will help provide benefits to other people with your heart condition, for example by discovering how many people in Australia have the same condition, or by providing information for researchers developing the best standards of care for people with your condition.

Survey data collected up to July 2018 was analysed and insights into living with and caring for Congenital Heart Disease was recently published in Heart, Lung and Circulation1

The National Congenital Heart Disease Survey (formerly the “Register-to-be-Registered (R2R)” Project) has been approved by the Human Research Ethics Committee of the Sydney Local Health District for Royal Prince Alfred Hospital.

If you were born with a congenital heart condition, or care for someone who was born with a congenital heart condition, you can participate in this important survey here.

Hamish HL

Reference: 1. Strange G, Stewart S, Farthing M, Kasparian NA, Selbie L, Donnell CO, et al. Living With, and Caring for , Congenital Heart Disease in Australia : Insights From the Congenital Heart Alliance of Australia and New Zealand Online Survey. Heart Lung Circ. 2019;(2018):1–7. (Link to publication)