What will we be asked to do?

Register your interest with the study:

Register your interest on our contact us page. You will then receive an information pack and consent forms to complete and return to the study team.

Main assessments (all families):

We will ask you to complete some online questionnaires through a secure internet connection. The questionnaires ask about your family’s medical background, and about your child’s development and behaviour. The assessments will take about 3 hours in total, but you do not have to complete them all in one go. Your answers will be saved as you go along. If you can not do this online, the IMAGINE ID team are happy to complete the questionnaires with you in person or over the phone. Based on your answers, we will send you a personalised summary report about your child’s strengths and difficulties. You may find this useful if your child has assessments for services, school or specialist treatments.

Further assessments (some families):

Based on your answers to the initial assessments, we will ask some families to complete additional online tasks.

Face-to-face interview (some families):

At registration we ask all families if they would like to take part in a face-to-face interview with our team. This will involve some additional games, puzzles and tasks with your child taking about 4-5 hours. Unfortunately, we are only able to perform a few home visits based on your location and the genetic condition of your child.