The Center of Health and Technology’s (CheT) Outcomes Division is conducting caregiver interviews to learn about and determine the most important symptoms to individuals with FXS.
The information obtained from the interviews will eventually be used to create a caregiver questionnaire to be used as an outcome measure for patients with Fragile X syndrome (FXS) during clinical trials and patient care.
About the Study
Who can participate?
Caregivers who are 18 years and older, speak English and take care of an individual who is diagnosed with Fragile X Syndrome may be eligible to participate.
What will happen in the study?
If the individual qualifies and decides to be in this research study, they will participate in a qualitative interview completed online. The interview will last 60 minutes or less and will focus on symptoms experienced by the person with FXS for whom you care.
The interview will be recorded (audio only) and transcribed for later reference. All information obtained will be kept strictly confidential and be kept in a secure location. In addition, you are not required to answer any questions that you do not wish to answer or do not know.
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, caregiver-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.
Because we will be collecting identifiable information about you, there is a risk of loss of confidentiality. To minimize this risk, all data will be kept in a secure location and only study team members will have access to it.
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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