What will we be asked to do?
*The study has now closed recruitment*:
Main assessments (all families):
For those that registered to the study, we asked them to complete some online questionnaires through a secure internet connection. The questionnaires asked about the family’s medical background, and about their child’s development and behaviour. The assessments took about 3 hours in total, but you did not have to be completed in one go. Answers were saved as they went along. If families could not do this online, the IMAGINE ID team completed the questionnaires in person or over the phone. Based on answers, the IMAGINE ID team sent a personalised summary report about their child’s strengths and difficulties.
Further assessments (some families):
Based on answers to the initial assessments, some families were asked to complete additional online tasks.
Face-to-face interview (some families):
At registration we asked all families if they would like to take part in a face-to-face interview with our team. This involved some additional games, puzzles and tasks with children taking about 4-5 hours. These interviews were based the families location and the genetic condition of the child.