If you have any more questions about the study which aren’t answered here, please contact us
Yes. You can withdraw from the study whenever you like without giving us a reason. However please contact us to tell us you no longer want to take part. Leaving the study will not affect any services or treatments you or your child receives. You can re-join the study later on if you want.
If your child is too young to take part in the study now please get in touch with your contact details anyway, so that we can re-contact you once your child has turned 4.
Yes. If your child has learning problems or developmental delay then he or she can join, as long as they also have a genetic change that is likely to be the cause of their problems.
Yes. Families who do not live in the UK can still take part in IMAGINE ID, but we will need a copy of your child’s full genetic report.
To complete the questionnaire, you need to have internet access and we can arrange Skype face-to-face sessions for those happy to do this.
No. This is a choice on the consent form, you can of course change your mind at any time.
I do not have internet access/ I am not good with computers, how would I complete the online questionnaire?
Don’t worry, just let us know you need help. You can still fill in the online questionnaire with the help of our research team; either over the phone or someone can visit you at home with a laptop to complete the questionnaire if you like. Please remember you can take regular breaks during this.
The online questionnaire will take about 3 hours in total, but this does not have to be done all at the same time. The information will be saved and stored as you go along.
If your family joins the study, you will receive a personalised summary of your child’s strengths and difficulties. You may find this useful 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.
Intellectual disability (ID), learning difficulties or developmental delay are terms used to describe people who struggle with some everyday activities and learning. This often means it will be more difficult for them to understand complex information, develop new skills and cope with unfamiliar situations.
Intellectual disability often has a genetic cause and many children with ID are born with genetic changes. These changes in the genetic code (DNA) are very complex. This means that people with ID rarely have the same genetic changes. Examples of genetic changes are gains or duplications of DNA and losses or deletions of DNA and changes of the letters of the DNA code.
Changes in DNA can affect genes that are important in brain development. This can lead to intellectual disability or difficulties with development and behaviour. We do not understand exactly how and why this happens yet. To really help people with ID we need to do much more research.