Skip to content

IEMbase 0012: NAGS-related N-acetylglutamate synthase deficiency

Scope

Field Value
IEMbase ID 12
Nosology 1.1.01.01
Gene NAGS
External IDs OMIM:237310
Generated mapping AMBIGUOUS by alias_exact:n acetylglutamate synthase deficiency
Candidate DisMech targets N-Acetylglutamate_Synthase_Deficiency.yaml; Urea_Cycle_Disorder.yaml#N-Acetylglutamate Synthase Deficiency
Review date 2026-07-07

IEMbase phenotype signal

Characteristic clinical features are coma, developmental delay, encephalopathy, and vomiting, again with stronger neonatal/infantile acute-decompensation signal. Additional features include failure to thrive, feeding difficulty/protein aversion, seizures, and neonatal temperature instability.

The biochemical profile includes high ammonia, increased plasma and CSF glutamine, low arginine, very low citrulline, normal argininosuccinic acid, and low/normal urinary orotic acid.

Treatments include protein-defined diet, arginine or citrulline, nitrogen-scavenger drugs, carglumic acid, hemodialysis, peritoneal dialysis, and liver transplantation.

DisMech phenotype coverage

The standalone DisMech disease is the best curation target. It covers hyperammonemia, encephalopathy, vomiting, lethargy, seizures, intellectual disability, failure to thrive, headache, cerebral edema, coma, and respiratory alkalosis. Biochemical entries cover plasma ammonia, plasma glutamine, plasma citrulline, urine orotic acid, and N-acetylglutamate. Treatments include carglumic acid, dietary protein management, nitrogen scavengers, extracorporeal ammonia removal, acute-crisis supportive care, citrulline/arginine, genetic counseling, and a carbamylglutamate therapeutic trial.

The Urea Cycle Disorder umbrella subtype causes the exact-alias ambiguity.

Concordance and completeness

Judgement: phenotype concordance is high, but mapping should prefer the standalone disease over the umbrella subtype for disease-level crosswalks.

IEMbase adds feeding difficulty/protein aversion and neonatal temperature instability. DisMech adds headache, cerebral edema, respiratory alkalosis, NAG biochemistry, and explicit carglumic-acid therapeutic testing.

Curation actions

  • Resolve crosswalk ambiguity by treating N-Acetylglutamate_Synthase_Deficiency.yaml as the canonical target.
  • Consider adding feeding difficulty/protein aversion if supported by evidence.
  • Consider whether peritoneal dialysis needs explicit mention or is adequately covered by extracorporeal ammonia removal.