Initially we are only recruiting people who live in Lothian but we hope to expand to the rest of Scotland soon.

The aim of the Scottish Fragile X Registry is to establish a national database containing detailed clinical information about people with fragile X syndrome.  It is a joint endeavour between the clinical genetics services around Scotland and psychiatrists from the Patrick Wild Centre at the University of Edinburgh.

Taking part would involve visiting your local clinical genetics department for an assessment which takes around 2 hours.  The results of the assessment will be made available to you.

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@nhs.net or calling her on 0131 537 6680.