Fragile X community views on medication trials

Background

Over the last few years, there have been more and more clinical trials for Fragile X syndrome. The goal of these clinical trials is to verify the usefulness of new or repurposed medications in helping with some core features of Fragile X. However, there are already several medicines available that can help with other symptoms linked with Fragile X (for example anxiety or ADHD). These medicines are much less researched in clinical trials for Fragile X.

Should clinical trials focus more on these other medicines?  

What does the Fragile X community think? 

What are the priorities for the Fragile X community when it comes to clinical trials?

Our study 

We want to understand the attitudes of the families living with Fragile X syndrome towards clinical trials and medication.

To do so, we created a new online survey for the Fragile X community. In this short 10-min long survey, we ask questions about:

  • what families think research should focus on
  • the experience of taking part in clinical trials
  • the experience of taking medications

Take part

If you are part of the Fragile X community, you can help us with this study. To take part, simply click on the link below to access the survey.

Link to the survey

Who is running the study?

This study is run by Sarah Eley and Andrew Stanfield. To know more, email Sarah at [email protected].