You may choose to print this page for your reference.



Feel free to use the paper copy of the questionnaire as a guide for what information you will need before starting to fill in a section online. It may be more convenient for you to have some of the following information handy at the computer before you begin:


The questions relate to your child with the CDKL5 disorder and are divided into two parts:

Part One: Questions about your child - 19 sections.

Part Two: Questions about you and your family - 3 sections.

There are some questions about which we acknowledge you may find hard to remember the specific details, especially if your child is older. You may find it useful to refer to your child's baby book, hospital or medical records, medical professionals or family and friends to recall some of this information. It is important for us to collect this information so that we can gain a greater understanding of the CDKL5 disorder and how the clinical features may change as your child gets older.

The questions in this questionnaire have all undergone consultation with parents of children with the CDKL5 disorder.

We are appreciative of the time that you are giving when answering these questions.