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Omenn syndrome

Last edited: 4/16/2026

Overview

Omenn syndrome is a severe combined immunodeficiency characterized by a lack of functional T cells due to a somatic mutation in a gene involved in V(D)J recombination, typically combined with a leaky or partially functional B cell compartment. It presents with early-onset infections, organomegaly, and often features of IPEX syndrome due to activation of self-reactive T cells 1.

Diagnosis

  • Key Diagnostic Criteria:
  • - Presence of reticuloendotheliosis and eosinophilia 1 - Deficiency in lymphocyte ecto-5'-nucleotidase activity 1
  • Recommended Tests:
  • - Lymphocyte function assays including ecto-5'-nucleotidase activity measurement 1 - Genetic testing for mutations in recombination-activating genes (RAG1, RAG2) 1

    Management

  • First-Line Treatments:
  • - Hematopoietic stem cell transplantation (HSCT) is the definitive treatment 1
  • Adjunctive Treatments:
  • - Immunoglobulin replacement therapy to manage infections 1 - Antimicrobial prophylaxis to prevent opportunistic infections 1

    Special Populations

  • Pediatrics: Early diagnosis and prompt HSCT are critical for survival 1
  • Key Recommendations

  • Measure lymphocyte ecto-5'-nucleotidase activity to aid in distinguishing Omenn syndrome from other immunodeficiencies (Evidence: Moderate) 1
  • Prioritize hematopoietic stem cell transplantation as the primary treatment strategy (Evidence: Expert opinion) 1
  • Implement immunoglobulin replacement therapy to support immune function in patients undergoing HSCT or those awaiting transplantation (Evidence: Moderate) 1
  • References

    1 Gelfand EW, McCurdy D, Rao CP, Cohen A. Absence of lymphocyte ecto-5'-nucleotidase in infants with reticuloendotheliosis and eosinophilia (Omenn's syndrome). Blood 1984. link

    Original source

    1. [1]

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