Please read this information carefully

This questionnaire collects information from patients and their parents/carers on the effect of rare chromosome 6 deletions and duplications

Thank you very much for agreeing to participate in our project. We realize that this questionnaire is rather long, but this is because we are trying to cover all aspects of general health and growth, congenital abnormalities, development and behaviour, and because since we think patients and parents will be interested in all of them.

Please take your time filling in the questionnaire. It can be saved at any stage and completed later. It may contain several questions that do not apply to your child. If, for example, a term is used that you are not familiar with, it may be because the question is not applicable to your situation.

The questionnaire is subdivided in three sections. If you have completed a section you can submit it. You can save the questionnaire and continue later, the questionnaire saves automatically, but there is also a button ‘save’ at the end of the questionnaire.

Most questions are formulated from a parent’s perspective. If you are filling in the questionnaire for yourself, as the person with the chromosome 6 alteration, please understand that any reference to ‘your child’ applies to you.

Thank you very much for your help!


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