Outcomes of patients with Juvenile Polyposis-Hereditary Haemorrhagic Telangiectasia caused by pathogenic SMAD4 variants in a pan-Scotland cohort

Eur J Hum Genet. 2024 Jun;32(6):731-735. doi: 10.1038/s41431-024-01607-w. Epub 2024 Apr 16.

Abstract

Constitutional loss of SMAD4 function results in Juvenile Polyposis-Hereditary Haemorrhagic Telangiectasia Overlap Syndrome (JP-HHT). A retrospective multi-centre case-note review identified 28 patients with a pathogenic SMAD4 variant from 13 families across all Scottish Clinical Genetics Centres. This provided a complete clinical picture of the Scottish JP-HHT cohort. Colonic polyps were identified in 87% (23/28) and gastric polyps in 67% (12/18) of screened patients. Complication rates were high: 43% (10/23) of patients with polyps required a colectomy and 42% (5/12) required a gastrectomy. Colorectal cancer occurred in 25% (7/28) of patients, at a median age of 33 years. Pulmonary arteriovenous malformations were identified in 42% (8/19) of screened patients. 88% (23/26) and 81% (17/21) of patients exhibited JP and HHT features respectively, with 70% (14/20) demonstrating features of both conditions. We have shown that individuals with a pathogenic SMAD4 variant are all at high risk of both gastrointestinal neoplasia and HHT-related vascular complications, requiring a comprehensive screening programme.

Publication types

  • Multicenter Study

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Child
  • Female
  • Humans
  • Intestinal Polyposis* / congenital
  • Intestinal Polyposis* / diagnosis
  • Intestinal Polyposis* / genetics
  • Intestinal Polyposis* / pathology
  • Male
  • Middle Aged
  • Mutation
  • Neoplastic Syndromes, Hereditary / diagnosis
  • Neoplastic Syndromes, Hereditary / genetics
  • Neoplastic Syndromes, Hereditary / pathology
  • Retrospective Studies
  • Scotland
  • Smad4 Protein* / genetics
  • Telangiectasia, Hereditary Hemorrhagic* / genetics
  • Telangiectasia, Hereditary Hemorrhagic* / pathology

Substances

  • Smad4 Protein
  • SMAD4 protein, human

Supplementary concepts

  • Juvenile polyposis syndrome