We are excited to announce the launch of our new online portal, the Patrick Wild Centre eHub, on the 10th October 2020, European Fragile X Awareness Day.
The aim of the eHub is to collect detailed information about large groups of people with fragile X, the premutation and a comparison group using short, widely used surveys which will then be repeated every 2 years. The idea is to gradually build up a rich picture about how these conditions affect people and how this might change over time.
Dr Andrew Stanfield, the Director of Clinical Research at the Patrick Wild Centre, who is running the study, said:
“I’d encourage anyone affected by fragile X or the premutation to take part. Not nearly enough is known about how these conditions affect people and how this might change as they get older. By taking part, people can help us to shine a light on the importance of this area and begin to answer crucial questions about what the future holds”