Reports

Since 2007, over 1,700 families have taken part in Our Fragile X World projects. They have given important information about how fragile X affects their lives. The reports below summarize key findings from these projects.

FEATURED REPORTS

Ability to Consent to Clinical Trials in Males and Females with Fragile X Syndrome

Our Fragile X World researchers studied the ability to consent in individuals with fragile X syndrome (FXS). They wanted to learn how well individuals with FXS understand what it means to take part in a clinical trial. This information can help people decide whether to take part in a clinical trial.

View research summary

Attendance at Fragile X Specialty Clinics: Facilitators and Barriers

Our Fragile X World researchers studied the differences between families who attend fragile X specialty clinics and those who do not. They wanted to understand what factors might affect families' ability to attend fragile X clinics.

View research summary

School Settings of Students with Fragile X

Our Fragile X World researchers studied types of educational settings of students with fragile X, the types of support they get, and how this support affects learning.

View research summary

A Comparison of Functional Academic and Daily Living Skills in Males with Fragile X Syndrome with and without Autism

Our Fragile X World researchers studied when males with fragile X syndrome master certain everyday life skills, and whether the skills of males with fragile X syndrome differ from males who have a co-diagnosis of autism.

View research summary

Family Communication and Cascade Testing for Fragile X Syndrome

Our Fragile X World researchers studied how families communicate about fragile X syndrome and what factors play a role in the decision to test other children and extended family members.

View research summary

Aggression in Fragile X Syndrome

Our Fragile X World researchers studied aggression in individuals with fragile X syndrome and how it affects the parents and legal guardians who take care of them.

View research summary