Fragile X Registry and eHub

Are open and recruiting volunteers!

The Fragile X Registry and eHub are being run by the Patrick Wild Centre at the University of Edinburgh. The purpose is to collect detailed clinical information about fragile X syndrome, and those who carry the premutation for the gene. We are also recruiting a control group (individuals who do not have fragile X syndrome or carry the premutation) for comparison purposes.

eHub

The eHub is the Patrick Wild Centre’s online portal where we ask you to complete a number of short surveys about yourself or someone you care for.  You have two months to complete them, after which the surveys close.  You will then be invited to complete them again in 2 years time.

We hope that this will allow us to look at how fragile X and related conditions affect people and how this might change over time.  We also hope that the information collected will tell us about how biological factors, like genetics, affect behaviour and cognition.

You can access the eHub here.

The Face to Face Registry

Unfortunately, at the moment we are unable to see people for face to face assessments.

Taking part usually involves visiting the University of Edinburgh for a face to face registry assessment which takes around 3 – 4 hours.  The results of the assessment will be made available to you.

 

More information

If you have any questions or would like to receive more information then please contact Dr Sonya Campbell or Dr Andrew Stanfield

Email:

[email protected]

[email protected]

Telephone: 0131 5376680

 We look forward to hearing from you.

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