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

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 Maddy Mazur from Pixabay