New Publication Reveals Deepest Insight into FOXG1

Longitudinal Characterization of FOXG1 Syndrome (2025)

Published in the Journal of Neurodevelopmental Disorders, this peer-reviewed study presents the largest and most detailed analysis to date of FOXG1 syndrome. The results come from the FOXG1 Citizen Health Natural History Study, led by the FOXG1 Research Foundation’s Chief Clinical Data Officer Elli Brimble, in collaboration with Citizen Health and international key clinical partners.

Analyzing data from 101 individuals with FOXG1 syndrome, the study provides a comprehensive view of clinical, developmental, and behavioral features over time. Key findings include clearer genotype-phenotype relationships, confirmation that FOXG1 syndrome is a static encephalopathy (not degenerative), and identification of meaningful clinical endpoints to inform upcoming therapeutic trials.

Read the full publication here

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FOXG1 Syndrome Earns Unique ICD-10 Code: QA00.151