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.
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
Research Study: Sleep in Children with Angelman Syndrome
Jayne Trickett, Mary Heald and Chris Oliver, researchers from the Cerebra centre of neurodevelopmental...
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
Neurodevelopmental outcome in Angelman Syndrome: Genotype-phenotype correlations
Angelman syndrome (AS) is a neurogenetic disorder that is characterised by intellectual disability, developmental...
Eating Behavior, Prenatal and Postnatal Growth in Angelman Syndrome
Clinical characteristics of Angelman syndrome include severe intellectual disability, developmental delay and lack of...
Cerebra sleep seminar 13th November - presentations now available
Cerebra hosted a sleep seminar in Birmingham focusing on sleep in children with developmental...
Learning in Angelman syndrome
Over the past three years, researchers at the Cerebra Centre for Neurodevelopmental Disorders have...
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...
Research Study: changes with age in genetic syndromes
Over the last ten years researchers from the Cerebra Centre for Neurodevelopmental disorders have frequently asked families what they would like research to address. This question is posed so that studies can be developed that fit with families needs and interests. Often, the key question that families pose is ‘what can I expect in the future for my child?’ This is a question about change, growth and development, and it highlights the uncertainty that many families feel when looking towards the future. Of course we cannot say for certain what will happen to children as they grow older as there are so many factors that can affect this; however, we do know that a person’s genetic syndrome may impact on the way a person develops and knowing a little more about this might be helpful to families. As researchers and clinicians, we often feel that our current answers to families’ questions about change over time are unsatisfactory because much of the research that has been carried out has been done in a...