The Fragile X Registry
Is open and recruiting volunteers!
The Scottish Fragile X Registry is 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 for a control group (individuals who do not have fragile X syndrome or carry the premutation) for comparison purposes.
This is for individuals who are unable to come to Edinburgh for a full registry visit. It consists a questionnaire containing a few of the questions we ask during the full registry visit. It takes approximately 10 minutes to complete and can be filled in anonymously if wished. The survey can be completed online, by post or by telephone.
For more information and to access the survey online, please look at the descriptions below and click on the one which best describes who you are interested in completing the survey about:
2. The full Registry
Taking part involves visiting the University of Edinburgh for a full registry assessment which takes around 2 ½ -4 hours. The results of the assessment will be made available to you. You can complete the full registry whether you have done the online questionnaire or not
If would like to be contacted about completing the questionnaire (by post or telephone) or the full registry please complete the boxes below and press submit.
If you have any questions or would like to receive more information then please contact Dr Sonya Campbell.
Telephone: 0131 5376680
We look forward to hearing from you.