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Pediatrics5 papers

NOCARH syndrome

Last edited: 4/15/2026

Overview

NOCARH syndrome is characterized by neonatal-onset cytopenia, autoinflammation, rash, and hemophagocytic lymphohistiocytosis, driven by C-terminal variants in CDC42 leading to mitochondrial dysfunction and aberrant type I interferon signaling 1.

Diagnosis

  • Identification of C-terminal CDC42 variants through genetic testing 1.
  • Clinical features include cytopenias, systemic inflammation, rash, and signs of hemophagocytic lymphohistiocytosis 1.
  • Elevated markers of inflammation and possibly hyperactivation of the pyrin inflammasome 1.
  • Management

  • First-line treatments: Management often focuses on supportive care including transfusion support for cytopenias and anti-inflammatory therapies 1.
  • Adjunctive treatments: Inhibition of type I interferon signaling with ruxolitinib has shown efficacy in achieving remission in some cases 1.
  • Special Populations

  • Pediatrics: NOCARH syndrome presents neonatally, emphasizing early diagnosis and intervention 1.
  • Comorbidities: Specific management strategies for comorbidities like severe infections requiring close monitoring and aggressive supportive care 1.
  • Key Recommendations

  • Perform genetic testing to identify C-terminal CDC42 variants for definitive diagnosis (Evidence: Strong 1).
  • Consider ruxolitinib for patients with refractory autoinflammation, given its potential to inhibit type I interferon signaling and achieve remission (Evidence: Moderate 1).
  • Implement aggressive supportive care measures, including transfusion support and anti-inflammatory treatments, tailored to clinical presentation (Evidence: Expert opinion 1).
  • References

    1 Kapp FG, Kretschmer S, Beckmann CCA, Wäsch L, Molitor A, Carapito R et al.. C-terminal variants in CDC42 drive type I interferon-dependent autoinflammation in NOCARH syndrome reversible by ruxolitinib. Clinical immunology (Orlando, Fla.) 2023. link

    Original source

    1. [1]
      C-terminal variants in CDC42 drive type I interferon-dependent autoinflammation in NOCARH syndrome reversible by ruxolitinib.Kapp FG, Kretschmer S, Beckmann CCA, Wäsch L, Molitor A, Carapito R et al. Clinical immunology (Orlando, Fla.) (2023)

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