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IEMbase 0592: NANS-related N-acetylneuraminic acid synthase deficiency

Scope

Field Value
IEMbase ID 592
Nosology 18.4.03.02
Gene NANS
External IDs OMIM:610442; ORPHA:168454
Generated mapping UNMAPPED; best candidate Spondyloepimetaphyseal_Dysplasia_Bieganski_Type.yaml
Candidate DisMech targets None exact
Review date 2026-07-07

IEMbase phenotype signal

IEMbase represents NANS-related N-acetylneuraminic acid synthase deficiency (CDG), with alternate labels NANS-CDG and spondyloepimetaphyseal dysplasia, Camera-Genevieve type. The record is autosomal recessive, classified under disorders of multiple glycosylation pathways, has unknown treatability, and has no treatment rows.

Biochemical rows include increased plasma and urinary N-acetyl-D-mannosamine. Clinical rows include developmental delay, seizures, microcephaly, short stature, facial dysmorphism, brachycephaly, broad nose, coarse face, flat ears, full lips, prominent forehead, sunken nasal bridge, synophrys, premature carpal ossification, small epiphyses, longitudinal metaphyseal striations, and skeletal dysplasia.

DisMech phenotype coverage

Spondyloepimetaphyseal_Dysplasia_Bieganski_Type.yaml is a false-positive generated candidate. It models X-linked AIFM1-associated mitochondrial spondyloepimetaphyseal dysplasia with neurodegeneration and hypomyelination. It does not represent NANS, sialic-acid biosynthesis, N-acetylneuraminic acid synthase deficiency, autosomal recessive inheritance, or N-acetyl-D-mannosamine accumulation.

The local glycosylation entries provide broad CDG context, but no exact NANS-CDG / Camera-Genevieve target was identified.

Concordance and completeness

Judgement: true local gap; reject the Bieganski-type SEMD candidate.

The candidate shares skeletal-dysplasia language, but gene, inheritance, pathway, biomarker, and disease identity diverge. IEMbase should be curated as a NANS/sialic-acid biosynthesis CDG, not as AIFM1 mitochondrial skeletal-neurologic disease.

Curation actions

  • Create or identify an exact NANS-CDG / Camera-Genevieve syndrome target before import.
  • Reject Spondyloepimetaphyseal_Dysplasia_Bieganski_Type.yaml as an exact mapping.
  • Preserve N-acetyl-D-mannosamine, skeletal maturation, metaphyseal/epiphyseal, facial, seizure, growth, and neurodevelopmental prompts.