We are excited to share journal publications like this one resulting from FORWARD data. There are many more papers currently in development, and the future for Fragile X syndrome research is bright as more data is gathered.


Sensory symptoms, including increased reactivity to stimulation (hyperarousal), are common in children and adults with Fragile X syndrome. Despite their common occurrence, there is limited literature on the subject. For this reason, researchers decided to conduct the first comprehensive analysis of characteristics of sensory symptoms in children with FXS and their impact on families. They analyzed data from 933 children (720 boys, 213 girls) enrolled in the FORWARD project including standardized questionnaires for caregivers and clinicians on an ad hoc basis.

Findings showed that males are more affected than females by sensory symptoms (87% vs. 68%) and hyperarousal (92% vs. 79%). The most common sensory symptom is difficulties with eye gaze, which increases with age in both boys and girls. A strong sensory response was associated with more severe behavioral problems. As children with FXS age, their sensory symptoms are more often treated with medications and less with occupational or physical therapies. Sensory symptoms and hyperarousal are impactful since their severity predicts more severe disruptive behavior and less participation in everyday activities.

It was concluded that sensory symptoms are common and impactful problems in FXS, which deserve more research to improve their outcome.


Lachiewicz, A. M., Stackhouse, T. M., Burgess, K., Burgess, D., Andrews, H. F., Choo, T. H., Kaufmann, W. E., & Kidd, S. A. (2023). Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the FORWARD Registry and Database Multisite Study. Journal of Autism and Developmental Disorders, 10.1007/s10803-023-06135-y. Advance online publication. https://doi.org/10.1007/s10803-023-06135-y

Woman in protective glasses looking forward and upAbout the FORWARD-MARCH Registry & Database

Since 2012, the CDC has funded four FORWARD Fragile X studies to expand understanding of Fragile X syndrome. The NFXF has been coordinating study efforts since the beginning and has been vital in ensuring its success.

FORWARD-MARCH is the next step and will collect more detailed information from participants to better understand FXS and improve the lives of children and adolescents with FXS and the lives of their families.

Below are more journal publications resulting from FORWARD data. 

more from forward

Featured image by Yatheesh Gowda from Pixabay