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.
Seizures in Fragile X Syndrome: Associations and Longitudinal Analysis of a Large Clinic-Based Cohort
The goal of this study was to better understand seizures in individuals with Fragile X syndrome using FORWARD, a multisite observational study initiated in 2012 involving FXS clinics in the Fragile X Clinic and Research Consortium.
In a sample of 1,607 individuals with FXS from FORWARD, 12% had seizures (13.7% males, 6.2% females) at some time in their life. The average age of seizure onset was 6.4 years with >80% having onset of seizures before age 10 and the majority resolving by age 15. Those with seizures were more likely to have autism spectrum disorder, later acquisition of expressive language, more severe intellectual disability, hyperactivity, irritability, and stereotyped movements. Those with seizures for ≥3 years had greater cognitive and language impairment, but not behavioral disruptions, compared with those with seizures for <3 years. Most did not need more than one anticonvulsant for management.
Berry-Kravis, Elizabeth, Filipink Robyn A., et al. Seizures in Fragile X Syndrome: Associations and Longitudinal Analysis of a Large Clinic-Based Cohort. Frontiers in Pediatrics. 2021; doi: 10.3389/fped.2021.736255
About the FORWARD Registry & Database
FORWARD is made possible by all the participating families sharing their life experiences for research. By giving families, doctors, scientific researchers, and policymakers an inside look into how Fragile X syndrome presents itself across the human lifespan, you’re involvement is a huge contribution toward more positive health outcomes and better care and services for future generations.
Below are more journal publications resulting from FORWARD data.
more from forward
Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome
FORWARD // Among the different models resulting from the latent class analysis, a 5-class solution yielded the most clinically meaningful pharmacotherapy-independent behavioral subtypes.
Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome
FORWARD // We examined the nature and degree of association between health-related quality of life and established measures of functioning in FXS; 155 parents completed the questionnaires on their child as part of the larger CDC-funded FORWARD study.