- Pena, Loren DM;
- Jiang, Yong-Hui;
- Schoch, Kelly;
- Spillmann, Rebecca C;
- Walley, Nicole;
- Stong, Nicholas;
- Rapisardo Horn, Sarah;
- Sullivan, Jennifer A;
- McConkie-Rosell, Allyn;
- Kansagra, Sujay;
- Smith, Edward C;
- El-Dairi, Mays;
- Bellet, Jane;
- Keels, Martha Ann;
- Jasien, Joan;
- Kranz, Peter G;
- Noel, Richard;
- Nagaraj, Shashi K;
- Lark, Robert K;
- Wechsler, Daniel SG;
- del Gaudio, Daniela;
- Leung, Marco L;
- Hendon, Laura G;
- Parker, Collette C;
- Jones, Kelly L;
- Goldstein, David B;
- Shashi, Vandana
PurposeTo describe examples of missed pathogenic variants on whole-exome sequencing (WES) and the importance of deep phenotyping for further diagnostic testing.MethodsGuided by phenotypic information, three children with negative WES underwent targeted single-gene testing.ResultsIndividual 1 had a clinical diagnosis consistent with infantile systemic hyalinosis, although WES and a next-generation sequencing (NGS)-based ANTXR2 test were negative. Sanger sequencing of ANTXR2 revealed a homozygous single base pair insertion, previously missed by the WES variant caller software. Individual 2 had neurodevelopmental regression and cerebellar atrophy, with no diagnosis on WES. New clinical findings prompted Sanger sequencing and copy number testing of PLA2G6. A novel homozygous deletion of the noncoding exon 1 (not included in the WES capture kit) was detected, with extension into the promoter, confirming the clinical suspicion of infantile neuroaxonal dystrophy. Individual 3 had progressive ataxia, spasticity, and magnetic resonance image changes of vanishing white matter leukoencephalopathy. An NGS leukodystrophy gene panel and WES showed a heterozygous pathogenic variant in EIF2B5; no deletions/duplications were detected. Sanger sequencing of EIF2B5 showed a frameshift indel, probably missed owing to failure of alignment.ConclusionThese cases illustrate potential pitfalls of WES/NGS testing and the importance of phenotype-guided molecular testing in yielding diagnoses.