Professor Chris Oliver gave families an update on the BRICC project (The University of Birmingham Research into the Characteristics of CdLS).

The research, funded by the National Lottery Charities Board, will continue over the next two years.

Professor Oliver said that 88 of the 229 forms sent to families had been returned.

Early results showed that the prevalence of self injurious behaviour (SIB) appears to be higher than expected in individuals with CdLS.

The early indicators suggest that there is increased risk of SIB in people with a greater degree of learning difficulty, those who showed compulsive behaviours and among older children and adults with CdLS.

Individual assessments have been sent to all families who returned questionnaires.

"The goal of all this is to see if challenging behaviour - including SIB - are more common in people with CdLS than other people with similar learning difficulties. We also want to know if it is influenced by outside events."

The BRICC team will continue to report back findings at family gatherings and through Reaching Out.