You will be asked to complete a survey, either online or via a posted paper copy (postage free of charge). The survey includes 12 questionnaires which will take about 60 minutes to complete – this can be done in one sitting or multiple sittings. You will be asked a variety of questions about behaviour, wellbeing, emotion, cognition, health, and access to support for children and adults with KBG syndrome. After you complete the survey, you have the option to answer another 5-minute questionnaire about your child/person you care for. We may also send this questionnaire to another caregiver of your child/person you care for (e.g. mother, father, grandparent, sibling, or carer), depending on your agreement. This ambitious survey will be repeated several times over the next few years. Our hope is that many families will choose to take part at multiple points so that we can see how responses change over time and get a much better insight into development in KBG syndrome across the lifespan.

Our hope is that in collecting a range of data from lots of people at different points in their lives, we can see how responses change over time and get a much better insight into development in KBG syndrome. The data we collect will also contribute to a better understanding of common areas of difficulty, as well as challenges that might be specific to individuals with Angelman syndrome. Through this work we may be able to offer better ideas for how to support people with KBG syndrome in the future.