Cardiovascular malformations caused by NOTCH1 mutations do not keep left: data on 428 probands with left-sided CHD and their families

Wilhelmina S Kerstjens-Frederikse, Ingrid M B H van de Laar, Yvonne J Vos, Judith M A Verhagen, Rolf M F Berger, Klaske D Lichtenbelt, Jolien S Klein Wassink-Ruiter, Paul A van der Zwaag, Gideon J du Marchie Sarvaas, Klasien A Bergman, Catia M Bilardo, Jolien W Roos-Hesselink, Johan H P Janssen, Ingrid M Frohn-Mulder, Karin Y van Spaendonck-Zwarts, Joost P van Melle, Robert M W Hofstra, M W Wessels

Research output: Contribution to journalArticleAcademicpeer-review

Abstract

PURPOSE: We aimed to determine the prevalence and phenotypic spectrum of NOTCH1 mutations in left-sided congenital heart disease (LS-CHD). LS-CHD includes aortic valve stenosis, a bicuspid aortic valve, coarctation of the aorta, and hypoplastic left heart syndrome.

METHODS: NOTCH1 was screened for mutations in 428 nonsyndromic probands with LS-CHD, and family histories were obtained for all. When a mutation was detected, relatives were also tested.

RESULTS: In 148/428 patients (35%), LS-CHD was familial. Fourteen mutations (3%; 5 RNA splicing mutations, 8 truncating mutations, 1 whole-gene deletion) were detected, 11 in familial disease (11/148 (7%)) and 3 in sporadic disease (3/280 (1%)). Forty-nine additional mutation carriers were identified among the 14 families, of whom 12 (25%) were asymptomatic. Most of these mutation carriers had LS-CHD, but 9 (18%) had right-sided congenital heart disease (RS-CHD) or conotruncal heart disease (CTD). Thoracic aortic aneurysms (TAAs) occurred in 6 mutation carriers (probands included 6/63 (10%)).

CONCLUSION: Pathogenic mutations in NOTCH1 were identified in 7% of familial LS-CHD and in 1% of sporadic LS-CHD. The penetrance is high; a cardiovascular malformation was found in 75% of NOTCH1 mutation carriers. The phenotypic spectrum includes LS-CHD, RS-CHD, CTD, and TAA. Testing NOTCH1 for an early diagnosis in LS-CHD/RS-CHD/CTD/TAA is warranted.

Original languageEnglish
Pages (from-to)914–923
JournalGenetics in Medicine
Volume18
Issue number9
DOIs
Publication statusPublished - 2016

Keywords

  • aortic coarctation; aortic valve; bicuspid; hypoplastic left heart syndrome; NOTCH1

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