The Behavioral Phenotype and Importance of Multidisciplinary Care in Patients With Sotos Syndrome: A Single-Center Experience.

Publication date: Jun 25, 2025

Sotos syndrome is an autosomal dominant condition caused by pathogenic variants in the NSD1 gene on chromosome 5q35. It is characterized by macrosomia, distinctive facial features, and developmental delays. Patients are also reported to have a behavioral phenotype including autism spectrum disorder, attention deficit/hyperactivity disorder, anxiety, and increased rates of tantrums and aggressive behavior. Here, we introduce and phenotype a novel cohort of 25 patients with molecularly confirmed Sotos syndrome. We also present the detailed behavioral histories of two patients and provide guidance for managing the behavioral manifestations of Sotos syndrome, highlighting the importance of a multidisciplinary approach to care for patients with this complex overgrowth condition.

Concepts Keywords
5q35 autism spectrum disorder
Autism behavioral phenotype
Autosomal macrosomia
Increased overgrowth
Sotos Sotos syndrome

Semantics

Type Source Name
disease MESH Sotos Syndrome
disease MESH disorder anxiety
disease MESH autism spectrum disorder

Original Article

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