Research Projects

The following section contains details of research projects that are currently being conducted in individuals with rare genetic syndromes and neurodevelopmental disorders.  The projects towards the top of the page are projects that are currently in need of participants.  Click on the project to read more about it and find out if you can take part.  At the bottom of the page you can find information about research projects that are ongoing that are no longer recruiting participants. These might be projects that have taken place within the last five years where results are currently being analysed or written up for publication.  Click on the project to read more about the progress of this project or to download preliminary results.

Current | Cornelia De Lange

Research into Behaviour, Emotion and Movement in Cornelia de Lange Syndrome

Researchers at Coventry University and the University of Birmingham have teamed up to investigate...

Current | Angelman

Communication Pilot

Measuring communication in genetic syndromes: A pilot study Researchers at the Cerebra Centre for...

Current | Angelman

Communication in Angelman syndrome

We are looking for parents of children with Angelman syndrome to take part in a...

Current | Cri Du Chat

The communication profile of Cri du Chat syndrome

  We are looking for parents of children with Cri du Chat syndrome to...

Current | Angelman

New Study Looking at Non-Compliance in Children

Researchers at the School of Psychology, Queen’s University Belfast are looking for parents and...

Current | Angelman

PREDICTORS

PREDICTORS: Parent Resources for Decreasing the Incidence of Change Triggered Temper Outbursts  The team at...

Current | General

Supporting individuals with Williams Syndrome to manage difficult emotional experiences

Experiencing difficult or unhelpful emotions is one of the major difficulties faced by individuals...

Current | Prader-Willi

Three new exciting research studies in Prader-Willi syndrome from Belfast University

Three new research projects are being conducted by Kate Woodcock at Belfast University.  The...

Current | Angelman

Sleep Disturbances in Children with Neurodevelopmental Disorders

Funded by Cerebra from 2013 to 2016   Background Previous research has described a...

Current | General

Self-injurious behaviour in non-verbal children

Background Self-injurious behaviour in non-verbal children, such as head banging, face slapping and self-biting,...

Current | Cornelia De Lange

Social cognition and its relation to social development in Fragile X Syndrome, Cornelia de Lange Syndrome, Rubinstein Taybi Syndrome and Autism Spectrum Disorder

This research is supported by the Leverhulme Trust   Background Recent research has investigated...

Archived | Prader-Willi

Understanding the Development of Resistance to Change in Individuals with a Neurodevelopmental Disorder

  Some individuals who have neurodevelopmental disorders such as Prader-Willi Syndrome can have negative...

Archived | Prader-Willi

Are you interested in taking part in a research project about skin picking in Prader-Willi syndrome?

Aims of the study This study aims to further our understanding of skin picking...

Archived | Cornelia De Lange

Decision making and executive function in Cornelia de Lange syndrome

Funded by the Cornelia de Lange Syndrome Foundation (UK and Ireland) from 2011 –...

Archived | Cornelia De Lange

Long term outcomes of individuals with Cornelia de Lange and Cri du Chat syndromes

Funded by Cerebra from 2009 to 2012   Background There is very little known...

Archived | Fragile X

Social impairment in fragile X syndrome

                                                  Funded by the ESRC and supported by the Fragile X Society...