What is the study about?
We are wanting to collect information about
changes in behaviour, emotion, physical and mental
health for people with genetic syndromes,
neurodevelopmental disorders and intellectual
disabilities. This is so we can understand the
impact of these experiences and hopefully offer
better ideas of support.
Who can take part?
You can take part if you are a parent or carer of an
individual diagnosed with either a genetic
syndrome, autism and/or an intellectual disability.
The person you care for must be at least one year
old.
What is asked from participants?
We will ask you to complete a range of
questionnaires that will ask you about topics such
as the person you care for’s diagnosis, health,
behaviour, and mood. We expect these questions
will take you 60 minutes to complete. You don’t
need to answer them all in one sitting. We may also
ask to do a phone interview with you.