Ongoing Study: Fragile X International Caregiver Burden ‘ONLINE’ Survey



Chief UK Investigator: Dr Andrew Stanfield, Senior Clinical Research Fellow and Co-Director of Patrick Wild Centre, University of Edinburgh.
Study organised and funded by Novartis Pharma AG.
Conducted by RTI International with the help of the Fragile X Society.



All those families who are on our research database will have had the mailing with instructions on how to log on to this survey. Many people have completed the survey and we should like ti thank those families who have.  As always the more responses that are received the more significant the results will be, so we do encourage anyone who has not done the survey yet to do so.


This study offers the first opportunity for fragile X families in the UK to give their experience of caring for children and adults affected by fragile X.


The primary goals of the survey are to describe (1) the behaviour problems of individuals with fragile X to serve as a baseline for future studies evaluating how treatments affect these problems; (2) the use of medical services and support for individuals with fragile X in order to better understand the health and social care costs associated with fragile X;     (3) to learn how caring for a person with fragile X affects family members; and  (4) to discover the age at which patients with fragile X are currently being diagnosed in the UK and how long the process of diagnosis is taking from first concerns being raised by parents to their learning the diagnosis.


We hope that as many of our families as possible will take part in this study so that significant data will be collected about our experience of living with fragile X in the UK.


The survey is open to parents or legal guardians of someone with fragile X. It takes about 45-60 minutes and does not need to be completed at one time. Participants can save their answers, exit the survey and return later.


If anyone has any difficulty with the survey please let the office know.


Anyone that did not receive a mailing who would like to take part please call our office on 01371 875100 to request the survey pack or visit Society’s website on