BEOND Study – Cerebra Network

Introduction:

BEOND (Behavioural and Emotional Outcomes in Neurodevelopmental Disorders) is a large-scale survey study looking at longitudinal outcomes for people with rare genetic syndromes and/or intellectual disabilities (characterised by IQ <70).

The survey is completed by parents / caregivers and takes approximately one hour to complete.

What is the Study About?

The Cerebra Network want to collect information about changes in behaviour, emotion, physical and mental health for people with intellectual disabilities and/or rare genetic syndromes. This is so they 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 the parent/guardian/carer of someone who meets these criteria:

1. Any of the following diagnostic categories:
   a. Those with a rare genetic syndrome that is associated with intellectual disability
   b. Those with autism and an intellectual disability
   c. Those with intellectual disability without a known genetic syndrome
   d. Typically developing children without any known neurodevelopmental disorder,
   intellectual disability, or genetic syndrome
2. The person you care for is at least one year old.

What Will You Ask?

They 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.

You can expect these questions to take you 60 minutes to complete. You don’t need to answer them all in one sitting.

They may also ask you to take part in a telephone interview.

Accessing the Survey

For more information and to access the survey, please follow this link to the Cerebra Network website.