Covid-19 impact on wellbeing of families of children with rare neurogenetic disorder

The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders and how these relate to mental health and wellbeing. Your responses will be rapidly fed back to charities and support organisations like Unique, and used to identify and provide better ways of supporting you both now and in the future.

The CoIN study are inviting those who have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder to participate in the study. You must be at least 16 years old to take part, and able to understand and communicate in English.

The survey will take up to 40 minutes to complete the first time you do it and about 15 minutes to complete thereafter. The CoIN study team will ask you to complete the survey once per month until children are back in their usual education

To find out more or to participate in the study, please click here.