IMAGINE ID is a research study that aims to increase understanding of children and young people with intellectual disability. More than 2,700 families have joined so far and the study is supported by UNIQUE, the rare chromosome disorder charity. The IMAGINE ID team is very keen to learn more about the link between behaviour and rare chromosome conditions. The study, led by University of Cambridge, University College London and Cardiff University, hopes to collect information from over 3,000 families by May 2019.
To participate in IMAGINE ID your child should be aged 4 or over. The research group is based in the UK but we are interested in families worldwide. If you live outside the UK, to take part you must have access to your child’s genetics reports. Taking part involves filling out secure online questionnaires about your child’s development and behaviour from the comfort of your own home. If you’re not happy with computers or do not have access to the internet, we can go through the questionnaire with you over the telephone or in person. The questionnaires will take approximately 2-3 hours, but you are able to save your answers as you go and can login an unlimited number of times to complete it.
After completing this you will receive a personalised summary report which you may find useful when your child is undergoing assessment for services, school or specialist treatment. If you wish, members of the IMAGINE ID team may also visit you at home to carry out an interview with you and puzzles with your child.
If you are interested and want to find out more about the IMAGINE ID study please contact us by telephone on +44 (0)1223 254 631 or email at imagine.id@nhs.net
We are very happy to answer any questions you have.
