Dr Sonya Campbell is a Research Fellow in Clinical Psychology at the University of Edinburgh. She has been a member of the Patrick Wild Centre since 2012.
Interventional studies have been greatly helped by the Scottish Fragile X Registry. The register holds key information about people with fragile X syndrome (FXS) and their families. As well as improving clinical care, it allows researchers at the Patrick Wild Centre to examine the relationship between biological factors and clinical presentation of FXS.
DATA RICH INTERVENTIONAL STUDIES ARE KEY TO IMPROVING TREATMENT FOR FXS
My research interests are in chronic neurodevelopmental conditions, such as fragile X syndrome. I work with families and individuals in and around Edinburgh who carry the full or pre-mutation of the fragile X gene across a number of interventional studies. I also run the Scottish Fragile X Registry, which records a range of information about those with FXS. The Registry was set up in 2013 and we assess participants’ social cognitive functioning, cognitive and neuropsychological ability, emotional wellbeing and mental health every two years.
Our key objectives are:
- To develop a better understanding of the natural history of fragile X syndrome in affected males and females, and of the clinical presentation and course of premutation carriers.
- To establish a database of well-characterised individuals with fragile X syndrome and premutation carriers, which will allow researchers to examine the relationship between biological factors and clinical manifestation.
- To provide a focus for an improved follow-up service for patients with fragile X syndrome, maintaining better contact with the family and providing information for the family.
- To develop a register of individuals who would be available to take part in other research studies concerning fragile X syndrome and conditions related to the premutation.
An example of interventional research is a new pilot study of Cogmed – a computer software program designed to improve a person’s working memory.