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Constitutional mismatch repair deficiency (CMMRD)

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A child with café-au-lait macules develops a brain tumor at age 6 and colorectal cancer at age 12. Both parents are found to have Lynch syndrome.

AR; biallelic MMR gene variants (MLH1, MSH2, MSH6, PMS2)

  • Parents are Lynch syndrome carriers
  • Childhood cancers (brain tumors, leukemia/lymphoma, GI cancers)
  • Café-au-lait macules (NF1-like)
  • Adenomatous polyps in childhood
  • MSI-high tumors
  • Very high lifetime cancer risk
  • Suspect in a child or young adult with a Lynch-spectrum or childhood cancer plus café-au-lait macules, especially with consanguinity or two parents from Lynch families
  • Tumors show microsatellite instability and loss of the corresponding MMR protein on IHC; importantly, normal (non-tumor) tissue also lacks MMR protein expression, distinguishing CMMRD from sporadic/Lynch tumors
  • Confirm with germline testing demonstrating biallelic (homozygous or compound heterozygous) variants in MLH1, MSH2, MSH6, or PMS2
  • Intensive multi-organ surveillance protocol begun in early childhood: regular brain MRI, abdominal ultrasound, and whole-body MRI for solid tumors
  • GI surveillance with upper endoscopy and colonoscopy starting in childhood, at shorter intervals than in Lynch syndrome, with polypectomy as indicated
  • Hematologic monitoring (CBC, exam) for leukemia/lymphoma
  • Avoid or minimize diagnostic radiation; immune checkpoint inhibitors are active in the resulting hypermutated tumors
  • Genetic counseling for parents (Lynch syndrome carriers) and at-risk siblings

CMMRD = "amped up" Lynch: CMMRD results from 2 inherited (biallelic) variants in any Lynch syndrome gene. Lynch is AD (heterozygous); CMMRD is the AR (homozygous/compound heterozygous) version with childhood-onset cancers.

AR cancer gene pattern: Heterozygous (AD) MMR variants cause Lynch syndrome; biallelic (AR) variants in the same genes cause CMMRD. Similar to how heterozygous BRCA variants cause HBOC but biallelic BRCA variants cause Fanconi anemia.

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