Children with neurofibromatosis type 1 (NF1), a gene condition that disrupts normal cell growth in the nervous system, often experience difficulties with everyday thinking skills, such as paying attention, remembering information and task management. However, it has been unclear how these challenges may differ across ages.

To address this gap, a large-scale international study by Assistant Professor Yang Hou, Ph.D., Postdoctoral Scholars Xiaoli Zong, Ph.D., Dan Liu, Ph.D., and colleagues combined data from over 1,000 children with NF1 across multiple research sites to examine age-related patterns in these thinking skills. 

Hou emphasized, “this project reflects years of collaboration across institutions and countries, all working toward a shared goal of better understanding neurobehavioral challenges in children with NF1. By bringing together these datasets, we can move beyond small, single-site studies and begin to capture developmental patterns with greater precision.”

Across the combined dataset, researchers found that children with NF1 experience more difficulties than typically developing peers, with the largest challenges observed in mid-childhood to mid-adolescence.

Importantly, the study shows that executive function difficulties in NF1 may differ across developmental periods and across individuals, rather than appearing uniform across childhood and adolescence. Although based on cross-sectional data comparing children of different ages rather than following the same children over time, these findings underscore the potential value of ongoing monitoring and support tailored to a child’s age and individual characteristics, rather than a one-size-fits-all approach. 

More broadly, this work demonstrates the value of multi-site collaboration and data sharing in rare disease research, where individual studies often lack sufficient sample sizes. It also highlights the need for future longitudinal research to better understand how executive functioning changes over time in children with NF1.