The Patrick Wild Centre (PWC) at the University of Edinburgh, a highly respected Fragile X clinic and translational research centre, is conducting an online survey to gather insights on the potential use of gene therapy in treating Fragile X syndrome (FXS). This innovative approach, which targets the genetic factors underlying FXS, is being explored because there are currently no treatments available that directly address the genetic cause of the condition.
Gene therapy has shown promise in laboratory studies and is being considered for other genetic neurodevelopmental disorders. This survey aims to understand the perspectives of families impacted by FXS on this emerging therapeutic option.
With the support of a grant from FRAXA, the Patrick Wild Centre is also conducting a clinical study which focuses on the sense of touch in individuals with Fragile X syndrome. This research builds on findings by Dr. Stanfield and colleagues, who have noted that reactivity to touch correlates with distress and anxiety in those affected by FXS.
Your participation is valuable and will contribute to the ongoing research into gene therapy for FXS. Please consider providing your input by participating in the survey.
