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IEMbase 0515: NSDHL-related CK syndrome

Scope

Field Value
IEMbase ID 515
Nosology 14.7.08.02
Gene NSDHL
External IDs OMIM:300831; ORPHA:251383
Generated mapping UNMAPPED; best candidate Wieacker_Wolff_Syndrome.yaml
Candidate DisMech targets No exact local target found
Review date 2026-07-07

IEMbase phenotype signal

IEMbase represents this as recessive NSDHL-related CK syndrome, with alternate labels NSDHL deficiency and CKS. No treatments are listed.

The biochemical rows include increased 4,4-dimethyl sterols and 4-methyl sterols in lymphoblasts. Clinical rows include almond-shaped eyes, epicanthal folds, high nasal bridge, high-arched palate, long narrow face, micrognathia, posteriorly rotated ears, retrognathia, seizures, thin body habitus, upslanting palpebral fissures, and dysmorphic features. Clinical-characteristic rows add behavioral disorder, cerebral cortical malformations, cognitive dysfunction, and microcephaly.

DisMech phenotype coverage

No exact local NSDHL/CK syndrome target was found. The generated candidate Wieacker_Wolff_Syndrome.yaml is not valid: it models ZC4H2-associated X-linked neurodevelopmental and neuromuscular disease with congenital contractures/arthrogryposis, distal weakness or atrophy, oculomotor apraxia, and developmental delay. It does not model NSDHL sterol-biosynthesis dysfunction, methyl/dimethyl sterol accumulation, or CK syndrome as an NSDHL phenotype.

The earlier NSDHL/CHILD syndrome IEMbase note also resolved as a true local gap. CK syndrome appears to be a distinct NSDHL-linked neurodevelopmental phenotype rather than the lateralized skin-limb CHILD phenotype.

Concordance and completeness

Judgement: true local disease gap.

IEMbase anchors this record in NSDHL and abnormal sterol intermediates, with a neurodevelopmental/dysmorphic phenotype including microcephaly, cerebral cortical malformations, seizures, behavioral disorder, and cognitive dysfunction. No local entry captures that gene-specific sterol disorder.

Curation actions

  • Do not map this record to Wieacker_Wolff_Syndrome.yaml.
  • Track NSDHL-related CK syndrome as a local gap separate from, or subtype-linked to, any future NSDHL/CHILD syndrome entry.
  • Preserve lymphoblast 4-methyl and 4,4-dimethyl sterol prompts plus the neurodevelopmental, seizure, microcephaly, cortical-malformation, and dysmorphic-feature rows.