The research team at the new Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, has teamed up with King’s College London and the University of Wales to conduct a detailed research project which will help us to understand more about challenging behaviour and family wellbeing in children and adults with Cornelia de Lange, Angelman and Cri du Chat syndromes.

The research work is funded by the Big Lottery. The project has been running since November 2006 and has been very successful. Working together with the CdLS Foundation we have already conducted in depth assessments with over 15 families caring for a young person with CdLS. For each person involved, a detailed assessment of challenging behaviour is conducted in addition to some brief interviews at home and over the phone. Together, this information is used to provide a detailed personal feedback report which includes suggestions for behaviour management strategies and ideas for promoting positive behaviour in the home and at school. Many thanks to those of you who have contacted us about the project or who have been involved so far. We are now looking for more families who may be interested in taking part in the research project.

Who would we like to see?

In this project we are inviting children and young adults aged between 2 and 19 years (inclusive) who are showing aggressive or self-injurious behaviour at least once a day to take part in the study. At this stage we would simply like to inform you of the study and ask any families of children and adults who are engaging in these behaviours to get in touch with us. If you have taken part in past projects or feel that we know the person with CdLS and so may not want to see them again, please still get in touch.

What is aggressive behaviour?

Aggressive behaviour includes any behaviour which may cause physical discomfort or possible harm to another person including hair pulling, grabbing, scratching, pushing, kicking, biting, hitting etc. It may well be that the person does not mean to hurt others or is too small to hurt others. For this project we would still be interested in hearing from you.

What is self-injurious behaviour?

Self-injurious behaviour includes any behaviour which may cause physical discomfort (including reddening of the skin or bruising) or harm to the person such as picking, biting, tapping, hitting, banging, scratching etc.

Contact Information

If the person you care for shows either or both of the above behaviours at least once a day or they show something like self-injury or aggression but you are not sure if they could be included, then please contact Professor Chris Oliver at the University of Birmingham on: 0121 414 4909; c.oliver@bham.ac.uk; or at the School of Psychology, University of Birmingham, Edgbaston, B15 2TT.

Alternatively, please contact Penny Tunnicliffe on: 0121 414 2942; or pennytunnicliffe@googlemail.com. Making an enquiring does not commit you to participation in the study. Finally, thanks for all of your support for our research at the University of Birmingham. As a result of the continued support we have received from the Cornelia de Lange Syndrome Foundation we have now been able to open the new Cerebra Centre for Neurodevelopmental Disorders. This new exciting venture will help us to continue our research work in CdLS.