Research Summary // Intellectual disability and co-occurring mental health conditions can be interpreted as autistic features, making it difficult to diagnose in FXS.
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.
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.
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.
Research Summary // Suggestions for improvement included additional financial support and increased utilization of collected patient data for research purposes.
Research Summary // Appropriate clinical management of affected individuals and their family members have become critical in addressing medical needs to improve quality of life.