FIND – Further Inform Neurogenetic Disorders
The Cerebra Centre for Neurodevelopmental Disorders is led by Professor Chris Oliver at the University of Birmingham. The aim of the Centre is to conduct high quality research with children and adults with neurodevelopmental disorders. The Centre focuses on researching behaviour, cognition and emotions.
The Cerebra Centre team has developed a novel online resource to improve the exchange of knowledge about rare genetic syndromes. The purpose of this website is to summarise research studies using a range of interactive and engaging formats, for example, parent stories, professional talking heads, bite-sized written information and an interactive database.
The website is called FIND, which stands for ‘Further Inform Neurogenetic Disorders’ and has been developed initially for three genetic syndromes. This is the first time research on three syndromes has been brought together with the aim of making the findings from these studies accessible to a much wider population through videos, professional interviews and family stories.
Image: Dr Jane Waite from the Cerebra Centre preparing for the launch of FIND.
On the website you can find information on the physical, cognitive and behavioural characteristics of Angelman syndrome alongside information on diagnosis, genetics and health. All of these sections have been developed with the aim of communicating need to know facts to parents, carers and professionals. In addition, for each syndrome there is a section that includes information on the causes, assessment and intervention of behavioural difficulties that may present in Angelman syndrome.
There are a number of family stories on the website as parents have kindly given up time to speak to the Centre about their experiences of parenting a child with Angelman syndrome. These are extremely interesting as parents provide unique insights and context for each of the areas covered by the website. Children and adults with Angelman syndrome have also contributed through “About Me” sections.
One unique feature of the website is an interactive database, which allows visitors to ask questions on behavioural characteristics in the syndromes. It is designed so that visitors to the site can select the syndrome, age group and behavioural characteristic of interest from drop-down menus. Information is then presented in an accessible way through a question and answer format.
Throughout the website there are links to existing web resources on Angelman syndrome and to the syndrome support groups as the purpose of the website is to complement existing information rather than be an exhaustive website on Angelman syndrome. FIND specialises in information on behaviour as this is the research area covered by the Cerebra Centre for Neurodevelopmental Disorders.
Members of the Cerebra Centre team are keen to hear back from families about their experiences of using this resource so they can develop it further. If families are interested in getting involved by contributing information or family stories please email firstname.lastname@example.org
This project is funded by the Cerebra and the Economic and Social Research Council (ESRC).
Article written by: Miriam Chaudhry, Effie Pearson and Hannah Ramshaw (Cerebra Centre Team)