Researchers from the University of Cambridge (UK) are carrying out an online survey about situations that might increase or decrease the chances of children/adults with epilepsy and intellectual disability having a seizure. We hope that learning more about this will lead to improved seizure management for people with Fragile X and other syndromes with high rates of epilepsy and intellectual disability.
- Are you aged 18 or above?
- Do you provide care or support for a child or adult with Fragile X Syndrome who has epilepsy and an intellectual disability?
- Have you known this person for at least a year?
- Are you the one who knows this person best, out of the people who care for or support this person?
- Has the person you support had at least one epileptic seizure in the last 12 months?
If your answer is ‘yes’ to all of the above questions, you are eligible to take part and you are invited to complete this online survey. Your responses are valued whether or not you have noticed anything about when seizures seem more likely to occur in the person you care for. For further information and to access the survey, please go to the website below and enter the password “cambridge” (all lower case).
http://cambridge.qualtrics.com/SE/?SID=SV_erJEHsR07aUAKm8
The research has been approved by the University of Cambridge Psychology Research Ethics Committee (ref 2011.37). If you have any queries about the research, please contact the researcher, Jo Illingworth, at jli22@cam.ac.uk.