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IEMbase 0183: CYP27A1-related cerebrotendinous xanthomatosis

Scope

Field Value
IEMbase ID 183
Nosology 14.8.04.02
Gene CYP27A1
External IDs OMIM:213700; ORPHA:909
Generated mapping MAPPED; Cerebrotendinous_Xanthomatosis.yaml
Candidate DisMech targets Cerebrotendinous_Xanthomatosis.yaml
Review date 2026-07-07

IEMbase phenotype signal

IEMbase represents this as CYP27A1-related sterol 27-hydroxylase deficiency, with alternate labels cerebrotendinous xanthomatosis, Van Bogaert-Scherer-Epstein disease, and CTX. Treatability is marked yes.

The biochemical rows include positive CYP27A1 sequencing, decreased fibroblast 27-hydroxylase activity, normal-to-increased serum cholesterol, liver pigment granules, increased urinary cholestane pentol glucuronide, increased plasma cholestanol from infancy onward, and low-to-normal 25-OH vitamin D. Clinical rows cover neonatal or childhood jaundice, diarrhea, cataract, tendon xanthomas, developmental delay, dementia, dysphasia, ataxia, demyelination, abnormal evoked potentials, neuropathy, pyramidal signs, spastic paresis, seizures, regression, parkinsonism, spinal cord myelopathy, pes cavus, osteoporosis, gallstones, adrenal insufficiency, thyroid or hypothalamic-pituitary dysfunction, angina, ischemic heart disease, myocardial infarction, and respiratory failure. The treatment row lists chenodeoxycholic acid.

DisMech phenotype coverage

Cerebrotendinous_Xanthomatosis.yaml is the correct target. The local entry covers CYP27A1/sterol 27-hydroxylase deficiency, reduced chenodeoxycholic acid, cholestanol and bile alcohol accumulation, chronic diarrhea, neonatal cholestasis, juvenile cataracts, tendon xanthomas, progressive neurologic dysfunction, peripheral neuropathy, pyramidal and cerebellar signs, psychiatric features, seizures, chenodeoxycholic acid, cholic acid as an alternative, possible statin adjunct therapy, and supportive care.

Concordance and completeness

Judgement: correct mapped target with high concordance.

IEMbase and DisMech agree on the disease identity, CYP27A1 enzyme defect, cholestanol/bile alcohol accumulation, early diarrhea or cholestasis, cataracts, tendon xanthomas, progressive neurologic disease, seizures, and chenodeoxycholic acid treatment. IEMbase adds granular cholestane pentol glucuronide, fibroblast enzyme testing, liver pigment granules, endocrine findings, gallstones, cardiovascular complications, osteoporosis, and respiratory failure as possible enrichment targets.

Curation actions

  • Keep this record mapped to Cerebrotendinous_Xanthomatosis.yaml.
  • Consider adding urinary cholestane pentol glucuronide and fibroblast 27-hydroxylase activity as diagnostic detail.
  • Review endocrine, cardiovascular, gallstone, and osteoporosis complications for possible CTX enrichment.