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About the CHARGE Syndrome project

Welcome to the CHARGE syndrome project. The project is designed to investigate sleep, pain and behaviour in children with CHARGE syndrome. The results from our project will provide new and valuable information about CHARGE syndrome, helping us to improve things for people with CHARGE syndrome in the future.


We have a database that we keep at the University of Birmingham where we store the names and contact details of some previous participants. If you would like us to, we can add your details to this database. We would use this information to contact you about future research to find out whether or not you would like to participate. If you would like to learn more about the Regular Participant Database, click the link below.

What can I do?

We are inviting parents, carers or guardians of children with CHARGE syndrome between the ages of 4 and 15 years to take part in our research. We are currently running three studies. If you choose to take part in our project, you can take part in one, two or all three studies! Taking part in one study does not mean that you are obliged to take part in either of the other two studies.

Why should I help the project?

The more people that take part in this research, the more meaningful the results will be. Our findings will be fed back to specialist CHARGE clinics, support organisations and charities. We will also present our findings at conferences and publish them in scientific journals. All our reports will be written in a way that does not personally identify you or your child. Read more on the news page about how the information 

In the future, we hope to follow up on the progress of the people who take part in our project. However, participation in this stage of the project will not mean that you are obliged to participate in further studies in the future. Click below to read the frequently asked questions about the study.