What are the key features of Rett Syndrome (RS) for the United States Medical Licensing Examination (USMLE) Step 1?

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From the Guidelines

Rett syndrome is a neurodevelopmental disorder characterized by normal development until 4 years of age, followed by decelerated head growth, loss of purposeful hand movements, and stereotyped hand movements, primarily affecting females due to mutations in the MECP2 gene. The key features of Rett syndrome (RS) for the United States Medical Licensing Examination (USMLE) Step 1 include normal head circumference and development at birth and during infancy, with head growth decelerating before 4 years of age 1. Some of the key clinical presentations are:

  • Loss of purposeful hand movements
  • Characteristic stereotyped hand movements, such as wringing or washing
  • Decelerated head growth
  • Normal development until 4 years of age The MECP2 gene plays a central role in this disorder, and mutations in this gene can lead to differing clinical manifestations in boys, ranging from fatal encephalopathy to progressive but nonfatal developmental disorder 1. It is essential to distinguish Rett syndrome from other neurodevelopmental disorders, such as childhood disintegrative disorder (CDD) and Asperger’s disorder, which have distinct clinical features and outcomes 1. For the USMLE Step 1 exam, it is crucial to remember the classic presentation of a girl with normal early development who regresses and develops the characteristic hand-wringing movements, as this is a high-yield clinical vignette.

From the Research

Key Features of Rett Syndrome

  • Rett Syndrome (RS) is a neurodevelopmental disorder caused predominantly by loss-of-function mutations in the gene Methyl-CpG-binding protein 2 (MECP2) 2
  • It is an X-linked dominant disorder, almost exclusively affecting females 3
  • MECP2 mutations or altered expression are also associated with a spectrum of neurodevelopmental disorders such as autism spectrum disorders 4
  • The disorder is characterized by progressive neurological deterioration, with symptoms including mental retardation, loss of speech, and motor dysfunction 3

Genetic Underpinnings

  • Nearly 80% of RS cases are sporadic, caused by mutations in the MECP2 gene located on Xq28 3
  • Mutations in the MECP2 gene have been identified in more than 80% of females with typical features of Rett syndrome 5
  • The most common mutation is R168X, and about 67% of all MECP2 mutations are located in the third and fourth exon 3

Clinical Manifestations

  • The majority of patients with identified MECP2 mutations have the classic Rett phenotype, while some have atypical phenotypes 5
  • Common clinical features include acquired microcephaly, although its absence does not obviate the need for MECP2 analysis 5
  • The disorder can result in an imbalance of neuronal excitation and inhibition at the circuit level, along with dysregulation of activity-dependent mechanisms 6

Diagnostic Guidelines

  • MECP2 analysis is essential for diagnosing Rett syndrome, and common mutations should be analyzed before sequencing the entire gene 5
  • Current diagnostic guidelines and clinical manifestations of RS are crucial for accurate diagnosis and treatment 2

References

Guideline

Guideline Directed Topic Overview

Dr.Oracle Medical Advisory Board & Editors, 2025

Research

Rett Syndrome and MECP2 Duplication Syndrome: Disorders of MeCP2 Dosage.

Neuropsychiatric disease and treatment, 2022

Research

Rett syndrome: from the gene to the disease.

European neurology, 2009

Research

Rett syndrome and MeCP2.

Neuromolecular medicine, 2014

Research

Mutation analysis in Rett syndrome.

Genetic testing, 2001

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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