Publications

Since 2008, studies conducted by Our Fragile X World have been published in peer-reviewed research journals worldwide.

Click on the links below to view publications. Links to view full text that are marked with an asterisk (*) may require a subscription or pay-per-article purchase to view.

A comparison of family financial and employment impacts of fragile X syndrome, autism spectrum disorders, and intellectual disability

Publication: Research in Developmental Disabilities
Date: July 2014

Modeling family adaptation to fragile X syndrome

Publication: American Journal on Intellectual and Developmental Disabilities
Date: January 2014

Health and economic consequences of fragile X syndrome for caregivers

Publication: Journal of Developmental & Behavioral Pediatrics
Date: November/December 2012

Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey

Publication: Journal of Intellectual Disability Research
Date: August 2010

Aggression in fragile X syndrome

Publication: Journal of Intellectual Disability Research
Date: January 2016

Autism Symptoms Across Adulthood in Men with Fragile X Syndrome: A Cross-Sectional Analysis

Publication: Journal of Autism and Developmental Disorders
Date: June 2015

DSM-5 changes and the prevalence of parent-reported autism spectrum symptoms in Fragile X syndrome

Publication: Journal of Autism and Developmental Disorders
Date: March 2015

Anxiety, attention problems, hyperactivity, and the Aberrant Behavior Checklist in fragile X syndrome

Publication: American Journal of Medical Genetics
Date: January 2014

Health and reproductive experiences of women with an FMR1 premutation with and without fragile X premature ovarian insufficiency

Publication: Frontiers in Genetics
Date: September 2014

Seizures in fragile X syndrome: characteristics and comorbid diagnoses

Publication: American Association on Intellectual and Developmental Disabilities
Date: May 2010

Prevalence, nature, and correlates of sleep problems among children with fragile X syndrome based on a large scale parent survey

Publication: Sleep
Date: January 2010

Obesity, food selectivity, and physical activity in individuals with fragile X syndrome

Publication: American Association on Intellectual and Developmental Disabilities
Date: April 2010

Self-injurious behavior and fragile X syndrome: findings from the national fragile X survey

Publication: American Journal on Intellectual and Developmental Disabilities
Date: November 2010

Using a parent survey to advance knowledge about the nature and consequences of fragile X syndrome

Publication: American Journal on Intellectual and Developmental Disabilities
Date: November 2010

Co-occurring conditions associated with FMR1 gene variations: findings from a national parent survey.

Publication: American Journal of Medical Genetics
Date: August 2008

Exploring the adult life of men and women with fragile X syndrome: results from a national survey

Publication: American Journal on Intellectual and Developmental Disabilities
Date: January 2011

Functional skills of individuals with fragile X syndrome: a lifespan cross-sectional analysis

Publication: American Journal on Intellectual and Developmental Disabilities
Date: July 2009

Family Communication and Cascade Testing for Fragile X Syndrome

Publication: Journal of Genetic Counseling
Date: October 2016

Caregiver opinions about fragile X population screening

Publication: Genetics in Medicine
Date: September 2011

No change in the age of diagnosis for fragile X syndrome: findings from a national parent survey

Publication: Pediatrics
Date: January 2009

Validity of a condition specific outcome measure for fragile X syndrome: the Aberrant Behaviour Checklist-utility index

Publication: Journal of Intellectual Disability Research
Date: March 2016

Developing a utility index for the Aberrant Behavior Checklist (ABC-C) for fragile X syndrome

Publication: Quality of Life Research
Date: July 2014

Therapy service use among individuals with fragile X syndrome: findings from a US parent survey

Publication: Journal of Intellectual Disability Research
Date: September 2012

Medication utilization for targeted symptoms in children and adults with fragile X syndrome

Publication: Journal of Developmental & Behavioral Pediatrics
Date: January 2012

Parent ratings of ability to consent for clinical trials in fragile X syndrome

Publication: Journal of Empirical Research on Human Research Ethics
Date: July 2014