In this section you can read various research news articles that have important topics relating to rare genetic disorders.
This section is for any parents or professionals who wish to read up to date information about syndromes and to broaden their knowledge.
The articles are ordered with the newest piece of research first and the articles can also be filtered by syndrome by using the filter.
We hope you find the research articles interesting!
Video Launch - Challenging Behaviour
We have launched a new video on the factors that lead to challenging behaviour. This video is available at the following link. You can give us feedback on the video by completing the survey that is available under the video. This video was made in partnership with the charity Cerebra.
Exciting New Research in Autism Launched Today
A new research study investigating mental health in people with autism is being launched today, 25th October 2017. The study is a collaboration between leading investigators at the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham, Aston University, and leading UK autism research charity, Autistica. Mental health problems affect 79% of people with autism, and managing these difficulties is a top priority for people living with autism. However, these dififculties, particularly for those who also have an intellectual disability, have been largely overlooked due to lack of research and support. For more information about this major new UK study click here. Researchers aim to recruit 5,000 autistic people, their families and carers to the 'Discover' research network by the end of 2017. To find out more and get involved please visit: https://www.autistica.org.uk/get-involved/take-part-in-research
Sleep: A New Cerebra Guide for Parents
A new guide for parents has been developed by researchers at the Cerebra Centre for Neurodevelopmental Disorders, and the Cerebra sleep team. This guide has been developed to help parents and carers understand the nature of sleep problems in children with intellectual disability and what can be done to improve sleep. Part one describes common sleep problems in individuals with intellectual disability and how these sleep problems are assessed. Part two gives a brief overview of sleep problems in specific genetic syndromes. Part three outlines some strategies which may help to reduce or improve sleep problems. Read the full guide here or download this PDF version
ASM 17 French Smith-Magenis Support Group Annual Conference
Lucy Wilde and Jayne Trickett attended the ASM 17 French Smith-Magenis support group annual conference in June 2016. Lucy and Jayne presented research from the team at the Cerebra Centre for Neurodevelopmental Disorders considering challenging behaviour that may be experienced by individuals with Smith-Magenis syndrome; focusing on self-injury and aggression. The nature of impulsivity in individuals with SMS was also discussed, alongside the question of autism and describing sleep disturbances. You can view Lucy and Jayne’s slides in French here or alternatively view the English version here
Smith Magenis Syndrome Awareness Month
November is Smith Magenis Awareness Month, and so parents and siblings of individuals with SMS were asked what they wish people understood about the syndrome. Please click here to view the videos of what they had to say. #AskMeWhatItIs For more information about Smith Magenis Syndrome, please click here.
The Benefits of Communication Passports
https://www.youtube.com/watch?v=vsLJS8uGgpY Research has shown that many behaviours that challenge are associated with communication difficulties. ...
Autism spectrum symptoms in Smith-Magenis syndrome and Williams syndrome: comparisons and contrasts
Autism Spectrum Disorder is characterised by a triad of impairments which involve persistent deficits...
Concrete and relational vocabulary: Comparison between Williams and Smith-Magenis Syndromes
A new study has compared the concrete and relational vocabulary performance of individuals with...
Cerebra sleep seminar 13th November - presentations now available
Cerebra hosted a sleep seminar in Birmingham focusing on sleep in children with developmental...
New perspectives on understanding challenging behaviour
Some individuals with intellectual disabilities can show behaviours such as self-injurious behaviour and aggression...
RESEARCH FINDINGS Social Interactions in SMS
A study led by Dr Lucy Wilde from the University of Birmingham has found differences in how children with Smith-Magenis syndrome (SMS) interact with others in comparison to children with Down syndrome. In order to find these differences Lucy Wilde visited the schools of 10 children with Smith-Magenis syndrome and 10 children with Down syndrome and observed them for a full day. The children with Smith-Magenis syndrome and the children with Down syndrome were a good match in terms of age. The sequence/pattern of interactions of children SMS with adults and peers were recorded. It was found that individuals with Smith-Magenis syndrome show a strong preference for interacting with adults over their peers. In addition, when children with Smith-Magenis syndrome are interacting with others this interaction appears to be less well organised in individuals with SMS in comparison to children with Down syndrome. For example, children with Smith-Magenis syndrome attempt to initiate interaction with adults at times when interaction is not possible. To hear Lucy discuss her research in more detail...