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 or use the drop-down menu to
view publications by study.

Evaluating sensory processing in fragile X syndrome: Psychometric analysis of the Brain-Body Center Sensory Scales (BBCSS)

Publication: Journal of Autism and Developmental Disorders
Date: June 2018
Study: Sensory Experiences Survey (2016)

Aggression in fragile X syndrome

Publication: Journal of Intellectual Disability Research
Date: January 2016
Study: National Fragile X Survey – Phase II (2012)

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

Publication: Journal of Autism and Developmental Disorders
Date: June 2015
Study: National Fragile X Survey – Phase II (2012)

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
Study: National Fragile X Survey – Phase II (2012)

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

Publication: American Journal of Medical Genetics
Date: January 2014
Study: Fragile X Caregiver Burden Survey (2011)

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
Study: National Fragile X Survey – Phase II (2012)

Seizures in fragile X syndrome: characteristics and comorbid diagnoses

Publication: American Association on Intellectual and Developmental Disabilities
Date: May 2010
Study: National Fragile X Survey – Phase I (2008)

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
Study: National Fragile X Survey – Phase I (2008)

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

Publication: American Association on Intellectual and Developmental Disabilities
Date: April 2010
Study: National Fragile X Survey – Phase I (2008)

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
Study: National Fragile X Survey – Phase I (2008)

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
Study: National Fragile X Survey – Phase I (2008)

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

Publication: American Journal of Medical Genetics
Date: August 2008
Study: National Fragile X Survey – Phase I (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
Study: National Fragile X Survey – Phase I (2008)

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

Publication: American Journal on Intellectual and Developmental Disabilities
Date: July 2009
Study: National Fragile X Survey – Phase I (2008)

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
Study: National Fragile X Survey – Phase II (2012)