Supporting people with Cri du Chat Syndrome and their families

Cerebra Update

by Caspar Hull on 04 April 2013

This is an update from the Cerebra Centre for Neurodevelopmental Disorders about their ongoing work on CdC and similar syndromes.

From research to practice: building accessible online resources for families and professionals.

The Cerebra Centre for Neurodevelopmental Disorders (CNDD) opened at the University of Birmingham in 2008. Prof. Chris Oliver, who oversees the Centre, has over 20 years of experience of working with individuals with genetic syndromes and their families. Our core value is to produce high quality research findings that enhance the well-being of individuals with genetic syndromes and their families.

We believe that it currently takes far too long for academic research findings to reach the individuals, families, professionals and communities who need this information quickly and efficiently.

Over the next eighteen months a team at the Cerebra Centre will be building new online and cloud resources which we hope will reduce this delay and help families, carers and professionals working with individuals with genetic syndromes to access the information they need, whenever and wherever they need it.

The website will iniitally feature six different genetic syndromes including: Angelman, Cornelia de Lange, Cri du Chat, Fragile X, Prader-Wills and Smith Magenis syndromes, with scope to expand this list in the not too distant future.

This dynamic website will include:

  • up to date research findings, taken from our own research studies and that of others in the field.
  • interactive materials including video clips and ‘sound bites’.
  • stories and experiences of parents, carers, siblings and people with genetic syndromes themselves
  • clear and easily accessible guidance for professionals regarding the key behavioural challenges and needs.
  • advice for professionals on how to assess these difficulties and identify those most at risk.

This project will be the first time that the team at the Cebebra Centre has worked with so many different syndrome groups in a single project and towards a common goal. We are very excited and priviledged to have this unique opporunity.

How can I get involved?

There are several ways in which you can get involved in this project:

  1. We would like to talk to as many families as possible about their experiences of existing online resources and what they have found helpful or unhelpful in the past. One of the ways in which we will do this will be to attend as many national conferences and meetings as we possibly can over the next few months. If you can’t make it to a conference and you would like to tell us about your experiences then please feel free to get in touch with us (details below).

  2. We are looking for any parents, carers or people with one of the six featured syndromes who would like to tell us about their expereinces of what life is like when you have a rare syndrome or care for someone who does. Stories can be made completely anonymous, with no identifying information should you wish. If this is something that you would like to do then please get in touch with us (details below).

  3. We will be contacting those families and individuals who have previously taken part in our research studies to ask them if we can include on the website specific video clips and photos of them/their child/person they care for or any quotes they may have offered during research interviews. Some of you may have already given this consent before for other resources. Even if that is the case, we will still need to contact you again to make sure you are happy for us to use them again for the website.

How can I get in touch with the CNDD website team?

Please do not hesitate to get in touch with the CNDD website project team if you have any queries or concerns or if you would like to offer your support for our project: