A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1

Abstract Background NOTCH1 is associated with two disorders of vascular development, Adams-Oliver Syndrome 5 (AOS5) and aortic valve disease 1 (AOVD1). Here we report a disease-causing variant in NOTCH1 that has a previously undemonstrated effect on splicing. Additionally, we found that the proband...

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Main Authors: Joseph Farris, Camila Dergam-Larson, Madeline Lopour, Kahlen Darr, Lisa A. Schimmenti, Brittni A. Scruggs, Laura J. Lambert, Eric W. Klee
Format: Article
Language:English
Published: BMC 2025-05-01
Series:BMC Medical Genomics
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Online Access:https://doi.org/10.1186/s12920-025-02160-1
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author Joseph Farris
Camila Dergam-Larson
Madeline Lopour
Kahlen Darr
Lisa A. Schimmenti
Brittni A. Scruggs
Laura J. Lambert
Eric W. Klee
author_facet Joseph Farris
Camila Dergam-Larson
Madeline Lopour
Kahlen Darr
Lisa A. Schimmenti
Brittni A. Scruggs
Laura J. Lambert
Eric W. Klee
author_sort Joseph Farris
collection DOAJ
description Abstract Background NOTCH1 is associated with two disorders of vascular development, Adams-Oliver Syndrome 5 (AOS5) and aortic valve disease 1 (AOVD1). Here we report a disease-causing variant in NOTCH1 that has a previously undemonstrated effect on splicing. Additionally, we found that the proband has the optic phenotype of familial exudative vitreoretinopathy (FEVR) which has been reported for probands with pathogenic variants in genes in the notch signaling pathway, but never for NOTCH1. Case presentation The proband presented with a ventricular septal defect, pulmonic stenosis, and ocular findings consistent with familial exudative vitreoretinopathy (FEVR), which NOTCH1 has not been associated with to date. Trio exome sequencing identified a paternally inherited variant of uncertain significance in NOTCH1:c.2153 A > G. We assessed the variant’s effect using RT-PCR, finding an increased use of a cryptic donor compared to the control. On this basis, we were able to re-classify this variant as pathogenic. Conclusions We expand the phenotypic spectrum of NOTCH1 and contribute to the building evidence that variants in NOTCH1 cause a spectrum of disorders of vascular development.
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spelling doaj-art-c404eb41d2e0478da74f732efe4495b92025-08-20T02:00:02ZengBMCBMC Medical Genomics1755-87942025-05-011811710.1186/s12920-025-02160-1A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1Joseph Farris0Camila Dergam-Larson1Madeline Lopour2Kahlen Darr3Lisa A. Schimmenti4Brittni A. Scruggs5Laura J. Lambert6Eric W. Klee7Center for Individualized Medicine, Mayo ClinicCenter for Individualized Medicine, Mayo ClinicDepartment of Clinical Genomics, Mayo ClinicDepartment of Clinical Genomics, Mayo ClinicDepartment of Clinical Genomics, Mayo ClinicDepartment of Ophthalmology, Mayo ClinicCenter for Individualized Medicine, Mayo ClinicCenter for Individualized Medicine, Mayo ClinicAbstract Background NOTCH1 is associated with two disorders of vascular development, Adams-Oliver Syndrome 5 (AOS5) and aortic valve disease 1 (AOVD1). Here we report a disease-causing variant in NOTCH1 that has a previously undemonstrated effect on splicing. Additionally, we found that the proband has the optic phenotype of familial exudative vitreoretinopathy (FEVR) which has been reported for probands with pathogenic variants in genes in the notch signaling pathway, but never for NOTCH1. Case presentation The proband presented with a ventricular septal defect, pulmonic stenosis, and ocular findings consistent with familial exudative vitreoretinopathy (FEVR), which NOTCH1 has not been associated with to date. Trio exome sequencing identified a paternally inherited variant of uncertain significance in NOTCH1:c.2153 A > G. We assessed the variant’s effect using RT-PCR, finding an increased use of a cryptic donor compared to the control. On this basis, we were able to re-classify this variant as pathogenic. Conclusions We expand the phenotypic spectrum of NOTCH1 and contribute to the building evidence that variants in NOTCH1 cause a spectrum of disorders of vascular development.https://doi.org/10.1186/s12920-025-02160-1NOTCH1Adams-oliver syndromeFamilial exudative vitreoretinopathyRare diseaseSplice variant
spellingShingle Joseph Farris
Camila Dergam-Larson
Madeline Lopour
Kahlen Darr
Lisa A. Schimmenti
Brittni A. Scruggs
Laura J. Lambert
Eric W. Klee
A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1
BMC Medical Genomics
NOTCH1
Adams-oliver syndrome
Familial exudative vitreoretinopathy
Rare disease
Splice variant
title A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1
title_full A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1
title_fullStr A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1
title_full_unstemmed A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1
title_short A case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in NOTCH1
title_sort case of congenital heart defects and familial exudative vitreoretinopathy caused by activation of a cryptic splice donor in notch1
topic NOTCH1
Adams-oliver syndrome
Familial exudative vitreoretinopathy
Rare disease
Splice variant
url https://doi.org/10.1186/s12920-025-02160-1
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