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Research Study asking for survey respondents

Are you a parent or caregiver to a child with Tuberous Sclerosis? The University of Newcastle, University of Tel Aviv, Duke University, and the Children’s Hospital of Philadelphia are interested in your experiences regarding the diagnosis of your child. We are also looking at how you told your child/ren about their genetic condition, and how they reacted.

If you have not yet told your child, we are interested in what your concerns are around telling them about the syndrome.

What would you be asked to do?

If you agree to participate, you will be asked to complete a 20-30 minute online questionnaire that relates to issues regarding Tuberous Sclerosis. This includes the diagnosis experience (i.e. how you as the parent or caregiver were told about  the Tuberous Sclerosis, the time of diagnosis, and your emotional reaction) as well as the disclosure experience (i.e. how you told your child with the condition and their siblings, how you felt about discussing the information, and how your child reacted to the situation).

Who can participate?

We are seeking people 18 and over who are either a parent or a caregiver to an individual with Tuberous Sclerosis.

Want to find out more?

If you want to find out more information, or would like to complete the 20-30 minute questionnaire, please follow this link:


If you have any questions or concerns, please contact Jane Goodwin ([email protected]) or Dr. Linda Campbell ([email protected]). This project has ethics approval from the University of Newcastle’s Human Research Ethics Committee, Approval No. H-2012-0129.

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