Researchers at the Cerebra Centre for Neurodevelopmental Disorders, Coventry University and more recently Aston University have focused on investigating emotion, such as anxiety, and behaviour in individuals with Cornelia de Lange syndrome (CdLS). They are now extending their work on anxiety and to include new factors that may lead to anxiety in CdLS. They are interested in understanding these factors and believe getting input from individuals with Cornelia de Lange syndrome and their parents/carers is the best way to do this. For example, they are interested in how people with CdLS make sense of uncertain situations. The researchers will be attending the Spring 2019 conference in Northern Ireland and will have many opportunities for families to get involved in research. From small focus groups, to questionnaires, to individuals with CdLS completing some fun tasks with the researchers! You can take part in something quick (30 minutes at the conference) or join one of the more detailed research studies. There will be opportunities for families of people with CdLS of all ages and abilities.
This research has now concluded.