What are your priorities for clinical trial research? What should the research focus on? Researchers at The Patrick Wild Centre are asking for your opinion on these critical questions. Have a say in the future of clinical trials for Fragile X by filling out a 10-minute online survey. Complete the contact form below to receive a link to the survey.
About the Survey
Why are they doing this research?
The Patrick Wild Centre (part of the University of Edinburgh’s College of Medicine & Veterinary Medicine) is conducting a survey to learn about the Fragile X community’s views on clinical trial research.
Who can participate?
Adults aged 18 and above with Fragile X (full mutation or mosaicism), and parents or caregivers of people with Fragile X (full mutation or mosaicism) are eligible to participate.
What will happen in the study?
If you meet the criteria above and wish to participate, please fill out the form below and you’ll be sent a link (by email) to take the online survey. The survey should take about 10 minutes to complete. Please keep in mind that the survey will need to be completed in one sitting.
What are the good things that can happen from this research?
The results of the survey will inform future clinical trials so that they take into consideration the views of the community.
What are the bad things that can happen from this research?
We do not expect any bad things that can happen from this research.
Will I/my child be paid to complete this survey?
No, you will not receive payment for taking the survey.
For more information, please visit The Patrick Wild Centre’s Fragile X community views on medication trials.