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Welcome to the Patrick Wild Centre eHub

Working together for research into fragile X syndrome and related conditions. The eHub is being run by the Patrick Wild Centre at the University of Edinburgh. The purpose is to collect detailed background and clinical information about fragile X syndrome, and those who carry the premutation for the gene.

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Who can join?

Anyone who is aged 16 and over and can provide consent for themselves, regardless of their fragile X mutation status.

  • Those under the age of 16 can complete the study, but they would need an adult to set up a profile for them.
  • Parents, guardians and legal representatives can fill in the study on behalf of their dependent.
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What will happen?

You will be asked:

  • to complete detailed background information and questionnaires.
  • to add family members.
  • to answer questions on whether you wish to be contacted about other research or not.

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