Content for Families, Carers and Professionals

CDKL5 Disorder Case Study Questionnaire

We are two doctors who work in paediatric neurology and are gathering information on the CDKL5 disorder to understand better the management and associated problems. We would be most grateful if you could spend some time answering these questions. All information from this questionnaire will be completely anonymous and confidential. You are not obliged in any way to take part in this survey. Please leave the question blank if you are not sure about it or if it is not relevant to your child.

Many thanks

Dr Sam Amin & Dr Rebecca Scarchard 


General Questions

Questions related to seizures

Questions related to the Vagal Nerve Stimulator (VNS)

Questions related to the Ketogenic Diet

Questions related to Gastrointestinal Tract (bowel/stomach)

Questions related to Heart

Questions related to Growth and Development

Many thanks for your cooperation