A brief overview of what to expect if you participate. Please contact us for more information.
What does participation involve?
Communication
When you first join the study you will be contacted by a member of the study team. They will answer any questions you may have about your participation in the study. The team member will collect information about you and your family history. Throughout the duration of the study you may hear from us for updates or gathering additional information.
Survey
To help us better understand the impact of inherited cardiomyopathies, we will ask you to complete some surveys. These have been designed to help us gather important clinical, family history, and lifestyle information related to your condition.
The surveys contain questions in multiple choice format, and each survey should take approximately 15-20 minutes to complete.
The first three surveys will be sent to you for completion soon after you enrol into the study:
- A clinical survey
- An environmental factors survey
- A health status survey
Once a year you will be asked to complete a follow up survey which takes 10 – 15 mins to complete.
Providing a blood sample
Your participation in this study will give us access to your medical record.
We will gather the information from your cardiologist. This may include your medical history, clinical examination previously performed by the cardiologist and results of any heart tests.
If you have had genetic testing in the past, we will also request a copy of your genetic test report from the genetics service you attended.
All of your information is kept strictly confidential.
Access to Medical Records
Participation in this study will involve collecting a blood sample from you. Your blood sample will be stored at the NSW Health Statewide Biobank and will undergo whole genome sequencing.
