Survey: Women with Fragile X Syndrome

//Survey: Women with Fragile X Syndrome

Survey: Women with Fragile X Syndrome

Fragile X syndrome is the most common cause of inherited intellectual disability. The clinical variability of this syndrome is wide, particularly in females who initially were thought to be unaffected or carriers. Females have random X-inactivation, which explains milder symptoms in females than in males.

Many women with Fragile X syndrome attend school, live independently, and express a desire to be in a romantic relationship. Some have children and discover their diagnosis after a child is diagnosed. Studies surrounding reproduction are often focused on premutation carriers and little research has been done to understand to motivations of women with Fragile X syndrome.

The purpose of this study would be to understand some of the psycho-social concerns of women with Fragile X syndrome as they relate to their own identity and interest in child bearing. This study surveys women with Fragile X syndrome anonymously about some of these issues.

This study will help medical providers gain a better understanding of some psycho-social concerns of women with Fragile X syndrome and provide more sensitive and meaningful interactions with them.

Participants will not provide any personally identifiable information and will be provided a summary of the study’s results.

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By | 2018-11-02T12:03:54+00:00 October 26th, 2018|Opportunities for families|Comments Off on Survey: Women with Fragile X Syndrome