Dr. Lauren Schmitt at Cincinnati Children’s Hospital Medical Center is conducting a series of focus groups to learn about behavioral and cognitive inflexibility in Fragile X syndrome in hopes of developing a new parent-/self-report measure.
About the Focus Groups
Who can participate?
Individuals with FXS (18 years or older and able to talk about own experiences with fluent language ), caregivers of individuals with FXS, and providers for individuals with FXS may be eligible to participate. Examples of eligible providers could be teachers, psychologists, social workers, and physicians.
What will happen in the study?
If the individual qualifies and decides to participate in this research study, they will complete an online focus group (one visit) over the next year.
The following is a list of some of the study procedures that will happen during the focus group:
- Share personal examples of behavioral/cognitive inflexibility.
- Identify different types of behavioral/cognitive inflexibility.
- Provide input on impact inflexibility has had on family, quality of life.
- Suggest possible items for parent-/self-report measure.
What are the good things that can happen from this research?
Ultimately, the focus group is designed to help form the basis of a new parent-/self-report measure of cognitive/behavioral inflexibility in FXS, which may be a useful tool for assessment, development of a treatment plan, and outcome measurement. In the short term, self-advocates and caregivers may benefit from the ability to share personal experiences, feel validated in their experiences, and enjoy a sense of community.
What are the bad things that can happen from this research?
There are minimal risks associated with the study. However, due to the personal nature of questions being asked and experiences being shared, it’s possible that participants may become distressed or upset. Of course, loss of confidentiality is always a risk as well. A licensed clinical psychologist will be present at each focus group to ensure participants understand the importance of confidentiality and to provide support and validation when a participant becomes distressed. All participants will be reminded they can stop participating at any time.
There may be other risks that we do not know about yet.
Will you/your child be paid to complete this survey?
Participants receive $30 for their participation in the focus group.
Our Most Recent Opportunities
Individuals with FXS who are 18 years or older and able to talk fluently about own experiences, and their caregivers and providers may be eligible to participate. Eligible providers include teachers, psychologists, social workers, and physicians.
NFXF has partnered with an advisory committee of international fragile X professionals to create an international fragile X premutation research registry. Find out how to participate.
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