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!
Cornelia de Lange
Gestures and communication in Cornelia de Lange syndrome
A new paper has just been published by researchers at the Cerebra Network and...
Cornelia de Lange
Behaviour Across the Lifespan in Cornelia de Lange syndrome
A new review paper has just been published by Dr Laura Groves, Prof. Chris Oliver and Dr Jo Moss. This paper summarises how some features of behaviour, emotion and cognition may change over the lifespan for an individual with CdLS and why this might happen. You can read an accessible summary of this research below. Behaviour Across the Lifespan in Cornelia de Lange syndrome - Groves, Oliver & Moss (2021)
Cornelia de Lange
Research summary: Executive functioning in Cornelia de Lange syndrome
Researchers from the University of Birmingham have recently written an accessible summary of a...
Syndrome Tags
- Angelman 10
- Cornelia de Lange 19
- Cri du Chat 6
- Smith-Magenis 9
- Prader-Willi 6
- Fragile X 16
- Kleefstra 0
- Rubinstein-Taybi 4
- Lowe 0
Cornelia de Lange
Anxiety in Cornelia de Lange syndrome
Presenter: Dr Hayley Crawford Date of presentation: 28th October 2017 Conference or event: Cornelia...
Cornelia de Lange
The Behavioural Phenotype of Cornelia de Lange Syndrome
Presenter: Prof. Chris Oliver Date of presentation: 6th November, 2017 Conference or event: The...
Cornelia de Lange
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
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 emotion, movement and behaviour in individuals with Cornelia de Lange syndrome. Hear from one parent about their experiences of taking part in this project and find out more about how you can get involved here: https://www.youtube.com/watch?v=ipHzd4I_D7Q&feature=youtu.be Email hayley.crawford@coventry.ac.uk or LXG502@bham.ac.uk or call 0121 414 2855 for more information.
Cornelia de Lange
Summary Article: Anxiety in Cornelia de Lange syndrome
Researchers at the Cerebra Centre have written a guide about anxiety in Cornelia de...
Cornelia de Lange
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.
Cornelia de Lange
The Benefits of Communication Passports
Research has shown that many behaviours that challenge are associated with communication difficulties. Interventions...
Cornelia de Lange
Pain in children with severe intellectual disability: A Guide for Parents
Cerebra have recently released a new parent guide to help parents of children with severe intellectual and/or communication difficulties to understand how pain may affect their child. This new guide explains the possible causes of pain in children with intellectual disability, presents information about how pain may be shown by children who are unnable to tell us that they are in pain and discusses the effects that untreated pain can have on your child. To download the guide, please visit the Cerebra webpage here.
Cornelia de Lange
Subtle differences in social behaviour identified in people with fragile X and Cornelia de Lange syndromes
Researchers at the Cerebra Centre for Neurodevelopmental Disorders, University of Birmingham have discovered that...