Purpose of Study
- To better understand the emotional experiences and experiences with support systems of mothers who are carriers of Fragile X syndrome and have had a child diagnosed in the first three years of life.
- Determine if there is a change in emotional intensity or a change in the types of support available and utilized by mothers before versus after a child is diagnosed with Fragile X syndrome.
- Determine if there is a correlation between emotional intensity and types of support utilized before and after a child is diagnosed with Fragile X syndrome.
Eligible Participants
- Participants must be female.
- Participants must be a carrier of Fragile X syndrome.
- Participants must have a child who was diagnosed with Fragile X syndrome in the first three years of life.
- Families with more than one child with Fragile X syndrome are welcome to participate.
IRB #
- This study has been approved by the Institutional Review Board at the University of Maryland under the IRB # HP-00065900.
Contact Information
- This study is being conducted by Amanda Catchings, a genetic counseling student at the University of Maryland, Baltimore with support from the University of Maryland Genetic Counseling Program Director Shannan Dixon, MS, CGC. Please email amanda.catchings@som.umaryland.edu with any questions or concerns.
To access the survey, please follow this link: surveymonkey.com/r/FraX-and-moms