Long-read sequencing is required for precision diagnosis of incontinentia pigmenti

Summary: Incontinentia pigmenti (IP) is caused by loss-of-function variants in IKBKG, with molecular genetic diagnosis complicated by a pseudogene. We describe seven individuals from three families with IP but negative clinical genetic testing in whom long-read sequencing identified causal variants,...

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Main Authors: Monica H. Wojcik, Robin D. Clark, Abdallah F. Elias, Casie A. Genetti, Jill A. Madden, Dana Simpson, Linda Golkar, Miranda P.G. Zalusky, Angela L. Miller, Araceli Rodriguez, Joy Goffena, Camille A. Dash, Nikhita Damaraju, Sophia B. Gibson, Sophie H.R. Storz, Zachary B. Anderson, Jonas A. Gustafson, Isabelle Thiffault, Emily G. Farrow, Tomi Pastinen, Jasmine Lin, Jennifer T. Huang, Alan H. Beggs, Pankaj B. Agrawal, David T. Miller, Danny E. Miller
Format: Article
Language:English
Published: Elsevier 2025-07-01
Series:HGG Advances
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Online Access:http://www.sciencedirect.com/science/article/pii/S2666247725000715
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author Monica H. Wojcik
Robin D. Clark
Abdallah F. Elias
Casie A. Genetti
Jill A. Madden
Dana Simpson
Linda Golkar
Miranda P.G. Zalusky
Angela L. Miller
Araceli Rodriguez
Joy Goffena
Camille A. Dash
Nikhita Damaraju
Sophia B. Gibson
Sophie H.R. Storz
Zachary B. Anderson
Jonas A. Gustafson
Isabelle Thiffault
Emily G. Farrow
Tomi Pastinen
Jasmine Lin
Jennifer T. Huang
Alan H. Beggs
Pankaj B. Agrawal
David T. Miller
Danny E. Miller
author_facet Monica H. Wojcik
Robin D. Clark
Abdallah F. Elias
Casie A. Genetti
Jill A. Madden
Dana Simpson
Linda Golkar
Miranda P.G. Zalusky
Angela L. Miller
Araceli Rodriguez
Joy Goffena
Camille A. Dash
Nikhita Damaraju
Sophia B. Gibson
Sophie H.R. Storz
Zachary B. Anderson
Jonas A. Gustafson
Isabelle Thiffault
Emily G. Farrow
Tomi Pastinen
Jasmine Lin
Jennifer T. Huang
Alan H. Beggs
Pankaj B. Agrawal
David T. Miller
Danny E. Miller
author_sort Monica H. Wojcik
collection DOAJ
description Summary: Incontinentia pigmenti (IP) is caused by loss-of-function variants in IKBKG, with molecular genetic diagnosis complicated by a pseudogene. We describe seven individuals from three families with IP but negative clinical genetic testing in whom long-read sequencing identified causal variants, including one family with the common exon 4–10 deletion not identified by conventional clinical genetic testing. Concurrent methylation analysis explained disease severity in one individual who died from neurologic complications, identified a mosaic variant in an individual with an atypical presentation, and confirmed skewed X chromosome inactivation in an XXY individual.
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spelling doaj-art-646577decf394de38dce15b1eafb34cd2025-08-20T02:22:01ZengElsevierHGG Advances2666-24772025-07-016310046810.1016/j.xhgg.2025.100468Long-read sequencing is required for precision diagnosis of incontinentia pigmentiMonica H. Wojcik0Robin D. Clark1Abdallah F. Elias2Casie A. Genetti3Jill A. Madden4Dana Simpson5Linda Golkar6Miranda P.G. Zalusky7Angela L. Miller8Araceli Rodriguez9Joy Goffena10Camille A. Dash11Nikhita Damaraju12Sophia B. Gibson13Sophie H.R. Storz14Zachary B. Anderson15Jonas A. Gustafson16Isabelle Thiffault17Emily G. Farrow18Tomi Pastinen19Jasmine Lin20Jennifer T. Huang21Alan H. Beggs22Pankaj B. Agrawal23David T. Miller24Danny E. Miller25Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USADivision of Clinical Genetics, Loma Linda University Children’s Hospital and Loma Linda University School of Medicine, Loma Linda, CA, USADepartment of Medical Genetics, Shodair Children’s Hospital, Helena, MT, USA; Division of Biological Sciences, University of Montana, Missoula, MT, USA; Division of Medical Genetics, Department of Pediatrics, University of Utah, Salt Lake City, UT, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USARandall Children’s Hospital, Portland, OR, USADepartment of Dermatology, Loma Linda University School of Medicine, Loma Linda, CA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USADivision of Clinical Genetics, Loma Linda University Children’s Hospital and Loma Linda University School of Medicine, Loma Linda, CA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USA; Department of Genome Sciences, University of Washington, Seattle, WA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USA; Molecular and Cellular Biology Program, University of Washington, Seattle, WA, USAChildren’s Mercy Hospital, Kansas City, MO, USAChildren’s Mercy Hospital, Kansas City, MO, USAChildren’s Mercy Hospital, Kansas City, MO, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USA; Manton Center for Orphan Disease Research, Boston Children's Hospital, Boston, MA, USABoston Children’s Hospital and Harvard Medical School, Boston, MA, USADivision of Genetic Medicine, Department of Pediatrics, University of Washington and Seattle Children’s Hospital, Seattle, WA, USA; Department of Genome Sciences, University of Washington, Seattle, WA, USA; Department of Laboratory Medicine and Pathology, University of Washington, Seattle, WA, USA; Brotman Baty Institute for Precision Medicine, University of Washington, Seattle, WA, USA; Corresponding authorSummary: Incontinentia pigmenti (IP) is caused by loss-of-function variants in IKBKG, with molecular genetic diagnosis complicated by a pseudogene. We describe seven individuals from three families with IP but negative clinical genetic testing in whom long-read sequencing identified causal variants, including one family with the common exon 4–10 deletion not identified by conventional clinical genetic testing. Concurrent methylation analysis explained disease severity in one individual who died from neurologic complications, identified a mosaic variant in an individual with an atypical presentation, and confirmed skewed X chromosome inactivation in an XXY individual.http://www.sciencedirect.com/science/article/pii/S2666247725000715incontinentia pigmentiIKBKGlong-read sequencingpseudogenestructural variationmethylation
spellingShingle Monica H. Wojcik
Robin D. Clark
Abdallah F. Elias
Casie A. Genetti
Jill A. Madden
Dana Simpson
Linda Golkar
Miranda P.G. Zalusky
Angela L. Miller
Araceli Rodriguez
Joy Goffena
Camille A. Dash
Nikhita Damaraju
Sophia B. Gibson
Sophie H.R. Storz
Zachary B. Anderson
Jonas A. Gustafson
Isabelle Thiffault
Emily G. Farrow
Tomi Pastinen
Jasmine Lin
Jennifer T. Huang
Alan H. Beggs
Pankaj B. Agrawal
David T. Miller
Danny E. Miller
Long-read sequencing is required for precision diagnosis of incontinentia pigmenti
HGG Advances
incontinentia pigmenti
IKBKG
long-read sequencing
pseudogene
structural variation
methylation
title Long-read sequencing is required for precision diagnosis of incontinentia pigmenti
title_full Long-read sequencing is required for precision diagnosis of incontinentia pigmenti
title_fullStr Long-read sequencing is required for precision diagnosis of incontinentia pigmenti
title_full_unstemmed Long-read sequencing is required for precision diagnosis of incontinentia pigmenti
title_short Long-read sequencing is required for precision diagnosis of incontinentia pigmenti
title_sort long read sequencing is required for precision diagnosis of incontinentia pigmenti
topic incontinentia pigmenti
IKBKG
long-read sequencing
pseudogene
structural variation
methylation
url http://www.sciencedirect.com/science/article/pii/S2666247725000715
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