Preventive Care Services in Fragile X Syndrome
Research Summary // About nine out of 10 children and young adults with Fragile X syndrome received the immunizations recommended by CDC between birth and 18 years of age.
Drug Interventions for IAAS in Fragile X Syndrome
Research Summary // A regularly cited group of behaviors in individuals with Fragile X syndrome, particularly males, is irritability, agitation, aggression and self-injurious behaviors.
ASD Diagnosis in Fragile X Syndrome
Research Summary // Intellectual disability and co-occurring mental health conditions can be interpreted as autistic features, making it difficult to diagnose in FXS.
Behavioral Issues in FXS+ASD
Thanks to FORWARD — the Fragile X Online Registry With Accessible Research Database — plus standardized clinician- and parent-reported data from 25 Fragile X clinics, we now have access to samples large enough to include a breakdown of findings by age groups.
Early Life Language Development in Fragile X Syndrome
FORWARD // This study is one of the first to examine early language development through vocal production and the language learning environment in infants and toddlers with FXS utilizing an automated vocal analysis system.
The Future of Fragile X Syndrome
Research Summary // The present challenge is to move from accurate diagnosis to public health action for FXS, requiring better understanding of the natural history of FXS.
Predictors of Attendance at Fragile X Clinics
Research Summary // Samples showed that children who attended Fragile X clinics were mostly male, high-school aged or younger, and white, non-Hispanic.
Cliniciansʼ Experiences with the Fragile X Clinical and Research Consortium
Research Summary // Suggestions for improvement included additional financial support and increased utilization of collected patient data for research purposes.
Importance of Fragile X Specialty Clinics
Research Summary // Appropriate clinical management of affected individuals and their family members have become critical in addressing medical needs to improve quality of life.