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!
Angelman
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...
Cornelia De Lange
New findings replicate association between repetitive behaviour and executive function in fragile X and Cornelia de Lange syndromes
Executive function is a term you may be familiar with, but most people have...
Angelman
Parent Story Workshop
The FIND website would not be what it is today without the input from...
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
General
The Launch of FIND
In September 2014, FIND (Further Inform Neurodevelopmental Disorders) goes live. This is the first time...
Cornelia De Lange
NEW RESEARCH STUDY Social Development in Cornelia de Lange syndrome
Over the last ten years researchers have learnt a lot about Cornelia de Lange syndrome...
Smith-Magenis
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...
Prader-Willi
Temper outbursts in Prader-Willi syndrome
Temper outbursts are commonly described in people with Prader–Willi syndrome (PWS); however they are...