Frequently asked questions

These are questions that are important for you to consider if you are thinking about taking part in the research. If you have any other questions that are not answered on these pages, please feel free to contact us.

What is this study about?: The aim of this study is to understand more about why heart problems (congenital heart disease) in children and adults occur. In particular, we want to find out which parts of the genetic code are involved in helping the heart form and why these genes fail in children and adults with congenital heart disease. Children at many heart centres are being invited to participate and the research is to be carried out at Oxford University.
Which children and adults will take part in the study?: You or your child will only be included in this study if you or they have a heart problem present from birth. We are also asking mothers who have had a child with a heart problem present from birth to consider getting involved as well.
What will taking part involve?: Taking part will involve giving a blood sample (about one - two teaspoons). This can be taken by your general practice nurse. It can also be taken at the same time as you or your child has a blood test for another clinical reason such as before heart surgery or cardiac catheterisation. The sample will be used to look for changes in genes that could cause congenital heart disease. No other tests will be performed.
Are there any risks to my child taking part in this study?: No. There are no risks involved in giving a blood sample.
Will I or my child benefit by taking part in the study?: This study will not benefit you directly but it will help us learn more about heart development and heart disease with the hope of improving treatment in the future.