The Scottish Fragile X Registry is now open and recruiting volunteers!
The aim of the Scottish Fragile X Registry is to establish a national database containing detailed clinical information about people with fragile X syndrome, or who carry the premutation for the gene and also for a control group (who do not have fragile X syndrome or carry the premutation). It is a joint endeavour between NHS clinical genetics services and psychiatrists from the Patrick Wild Centre at the University of Edinburgh.
Taking part would involve visiting the University of Edinburgh for an assessment which takes around 3 hours. The results of the assessment will be made available to you.
Find out more
If you are considering taking part in the Registry project or would just like to receive more information about it then please contact Dr Sonya Campbell by emailing Sonya.Campbell@ed.ac.uk