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Maple syrup urine disease

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Disease definition

A rare inherited disorder of branched-chain amino acid metabolism classically characterized by poor feeding, lethargy, vomiting and a maple syrup odor in the cerumen (and later in urine) noted soon after birth, followed by progressive encephalopathy and central respiratory failure if untreated. The four overlapping phenotypic subtypes are: classic, intermediate, intermittent and thiamine-responsive MSUD.

ORPHA:511

Classification level: Disorder

Synonym(s):
  • BCKD deficiency
  • BCKDH deficiency
  • Branched-chain 2-ketoacid dehydrogenase deficiency
  • Branched-chain ketoaciduria
  • MSUD

Source: PubMed ID 20301495

Prevalence: 1-9 / 1 000 000

Inheritance: Autosomal recessive

Age of onset: Childhood, Infancy, Neonatal

ICD-10: E71.0

ICD-11: 5C50.D0

OMIM: 615135 620698 620699 248600

UMLS: C0024776

MeSH: D008375

GARD: 3228

MedDRA: 10026817

Summary
Epidemiology

The estimated prevalence is around 1/150,000 live births, from published and unpublished newborn screening data.

Clinical description

Classic MSUD presents in the first days of life with poor feeding and drowsiness followed by a worsening encephalopathy with lethargy, intermittent apnea, stereotypic movements ("fencing" and ''bicycling") and opisthotonus. Coma and central respiratory failure supervene 7 to 10 days after birth. The only abnormality in biochemistry is ketosis. Intermediate MSUD clinically resembles classic MSUD but it can have a later onset and less severe symptoms. Intermittent MSUD patients are asymptomatic at birth but may suffer episodes of acute decompensation or develop neurological symptoms and developmental delay during childhood. Thiamin-responsive MSUD is clinically similar to intermediate MSUD with thiamin therapy improving dietary leucine tolerance.

Etiology

MSUD is due to mutations in the genes encoding subunits E1a, E1b, and E2 of the branched chain 2-ketoacid dehydrogenase (BCKAD) complex, involved in the second enzymatic step in the degradation of the branched chain amino acids (BCAAs): leucine, isoleucine and valine. BCKAD has four subunits: E1a, E1b, E2, and E3, which are encoded by the genes BCKDHA (19q13.1-q13.2), BCKDHB (6q14.1), DBT (1p31) and DLD (7q31-q32) respectively. Mutations in these genes lead to the accumulation of BCAAs (especially leucine) and their branched-chain alpha-ketoacids. Mutations in the E3 subunit gene (DLD) are not associated with MSUD but lead to pyruvate dehydrogenase E3 deficiency. A mutation in the PPM1K gene (4q22.1) has been reported in a single case of mild intermediate MSUD.

Genetic counseling

MSUD follows an autosomal recessive inheritance pattern and genetic counseling is possible.

Last update: April 2014
A summary on this disease is available in Français, Español, Deutsch, Italiano, Português, Nederlands Suomi, Ελληνικά
Detailed information

Logo ERN: produced/endorsed by ERN(s) Logo FSMR: produced/endorsed by FSMR(s)

General public
Article for general public
Svenska (2021) - Socialstyrelsen
Guidelines
Emergency guidelines
Français (2020.pdf) - Orphanet Urgences
English (2012.pdf) - Brit Inher Metab Dis Group
Anesthesia guidelines
English (2015) - Orphananesthesia
Clinical practice guidelines
English (2014) - Mol Genet Metab
English (2025) - Orphanet J Rare Dis
Disease review articles
Clinical genetics review
English (2020) - GeneReviews
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