You may choose to print this page for your reference.
WHAT TO DO
- The questionnaire does not have to be completed in one sitting.
Each section is submitted individually so you can do them one at a time.
On the "status page" you will see the list of all the sections.
Next to each section is a To be completed link.
Click on the link to begin a section.
- At the bottom of each section there is a Save and a Submit button.
If you need to exit a section before you have completed it, click on the SAVE button.
When you return to the questionnaire the section will have a Review link and
you can click on this to carry on where you previously left off.
- When you complete a section click the Submit button.
Once you have submitted a section you will not be able to go back and see your responses,
so you may wish to print the page before submiting.
- If you submit a section by mistake or you need to make changes to information
you have already submitted please email us for
- Please answer each question unless instructed otherwise.
If there are questions that you are unable to answer, please leave the question blank.
- Please add any additional information or comments that you wish in the spaces provided.
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:
- Medical history of your child;
- Names and doses of medications and supplements;
- Therapy history of your child;
- Your child's current measurements;
- A list of any general disability services used;
- A list of equipment used by your child;
ABOUT THE QUESTIONNAIRE
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.