The University of Rochester Center for Health + Technology is conducting a survey to learn about the most prevalent and impactful symptoms of FXS that the individual experiences, as reported by the caregiver. This information will then be used to develop a survey as a caregiver-reported outcome measure to be implemented in clinical trials and patient monitoring.

About the Study

Who can participate?

Caregivers who are 18 years that are caring for an individual with any mutation of Fragile X (FXS or the Fragile X premutation) may be eligible to participate.

What will happen in the study?

If the caregiver qualifies and decides to be in this research study, they will complete an online survey regarding the symptoms experienced by the individual with FXS, as reported by the caregiver. The survey should take about 20 minutes to complete. The survey may be completed in more than one sitting.

What are the good things that can happen from this research?

Information from this study can help build on the research already published and help provide further information regarding the disease burden of individuals with FXS.

We hope to publish the results of this study and develop a fully validated, disease-specific, observer-reported outcome measure to be implemented in therapeutic trials and patient care.

What are the bad things that can happen from this research?

Risks for the study are minimal. Some of the questions may make you feel uncomfortable. You will not be required to answer any question that you do not know the answer to or do not wish to answer. There are no other expected risks to you for participating in this study.

There may be other risks that we do not know about yet.

Will I or my child be paid to complete this study?

There is no payment for participating in this study.

Interested in Participating?

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