How will my child benefit?
If your family joins the study you will receive a personalised summary report of your child’s strengths and difficulties every year that you complete an assessment as part of the study. You may find it a useful report if your child has assessments for services, school or specialist treatments.
Joining IMAGINE ID offers a chance to help learn more about children living with rare genetic conditions and to understand these conditions better. Taking part in the study may not change things for your own child straight away, but it will help other families and doctors get better information about children’s development and behaviour in the future.
Parents are often experts in their own child’s behaviour and well-being, so collecting information and knowledge from families is very important. Sharing your knowledge and know-how will be very useful to other families.
You will receive a Strengths and Difficulties Questionnaire summary report every year.
You will receive a Developmental and Wellbeing Assessment (DAWBA) report once throughout the course of IMAGINE 2.