Research

The Cri Du Chat Syndrome Support Group are committed to improving the information available about Cri Di Chat.  It is because of this that we activly encourage our members to participate in research.  Below are some examples of results which have been published.  

The Handbook

Since the formation of the Support Group a major facet of our work has been to encourage research into the Syndrome and to learn of developments from around the world. Over the years we have been in contact with researchers from Italy, Holland, Demark and the United States, several of whom have given presentations at our annual Conference.

During the 1990s Professor Kim Cornish, a developmental neuropsychologist, and Dr. Margaret Collins, a consultant clinical psychologist, were regular visitors to the Conference and gave presentations on their individual work with the Syndrome. A collaboration was formed and PPP Foundation awarded a major research project grant to the team which by then included Dr Penny Standen and Professor Helen McNulty.

The study was conducted from 2000 to 2002 and information was gathered from families representing all corners of the UK and Southern Ireland. The findings are reported in our booklet, published 2003, “Cri du chat Syndrome, Handbook for Parents and Professionals”, which is available from our download page.  For the booklet, please contact us.  Needless to say this first information base would not have been possible without the participation of the families.

Parents have found the information of great assistance in the development of their CDC child, and professionals have been very grateful for the information it contains.

Self-injurious behaviour.

During the past three years Professor Chris Oliver, who also contributed to the booklet, and his team at Birmingham University have been looking at self-injury, (self biting, hitting head with hand, hitting head against objects). There is a fairly high incidence in the CDC Syndrome compared to other people who have intellectual disability.

It may be that such behaviour is learned as a means of communicating to obtain a need.

The Big Lottery, Spring 2006, have awarded a grant of £306,247 to a consortium of three support groups representing Cri du chat, Cornelia de Lange, and Angelmans. Those with these syndromes exhibit many similar behaviours and we are hopeful that this new three year project will produce methods of intervention that will aid our children and families.

It is hoped that all families approached will be able to participate.  It is only by as many families as possible taking part in such projects that we will obtain the information desired by us all.

The larger the group of Cri Du Chat children participants, the more meaningful and useful the research results will be for future families.