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!
Mental health difficulties in Williams, Prader-Willi & fragile X syndromes
A recent paper published in 2019 has described and compared a number of characteristics that are associated with mental health in adolescents and adults with Williams, fragile X and Prader-Willi syndromes. Individuals with these syndromes may experience different types of mental health difficulties. For example, people with fragile X syndrome may be more likely to experience social anxiety disorder than individuals with Prader-Willi or Williams syndrome. Because of this, causes of mental health problems in these syndromes may also differ and understanding the differences can help us understand how best to help individuals. The research showed that there was differences in the characteristics associated with different psychopathological disorders in these syndromes. Poorer adaptive functioning in Prader-Willi syndrome was associated with a higher total mental health score and higher levels of general anxiety and manic/hyperactive behaviours but was not associated with any mental health difficulties in fragile X or Williams syndrome. For Williams syndrome, the presence of health difficulties was associated with emotional difficulties, and auditory sensory processing difficulties...
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.
Mental health difficulties in children with learning disabilities
Overview of the presentation This presentation was delivered by Chris Oliver and Jane Waite (pictured...
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
Anxiety guide is 'Highly Commended' by BMA
Hayley Crawford, Rachel Royston and representatives from Cerebra attended the BMA Patient Information Awards 2016. The Cerebra parent guide on anxiety has been awarded Highly Commended! The guide is written for parents of children with developmental disabilities. Read the guide The guide was produced by Cerebra and was written by Dr Jane Waite and Rachel Royston from the Cerebra Centre for Neurodevelopmental Disorders, and Dr Hayley Crawford from Coventry University.
Food related issues in Angelman and Prader-Willi syndromes
Angelman (AS) and Prader-Willi (PWS) syndromes are caused by missing genetic information on the...
New perspectives on understanding challenging behaviour
Some individuals with intellectual disabilities can show behaviours such as self-injurious behaviour and aggression...
Temper outbursts in Prader-Willi syndrome
Temper outbursts are commonly described in people with Prader–Willi syndrome (PWS); however they are...