Stewart Russell, Ezell Kimberly M, Bell Deanna S, Corner Brian, McMinn Ashley, Cogan Joy D, Hamid Rizwan, Rives Lynette, Phillips John A, Paddu Nina, Srivastava Gitanjali, Marom Ronit, Ladha Farah A, Soler-Alfonso Claudia, Franciskovich Rachel, Koziura Mary, Pruthi Sumit, Richard Gabriele, Sheedy Christina B, Cassini Thomas
Vanderbilt University School of Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Department of Pediatrics, Division of Medical Genetics and Genomic Medicine, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Am J Med Genet A. 2025 Aug 21:e64233. doi: 10.1002/ajmg.a.64233.
Nizon-Isidor syndrome is a rare disorder caused by heterozygous variants in MED12L, with only eight documented cases in the literature. Here, we present three additional cases of this syndrome. Proband 1 was a 7-year-old female who presented with developmental delay, right-leg hemihypertrophy, laryngeal cleft, esotropia, abnormal skin pigmentation, sectoral iris hypopigmentation, dysphagia, periventricular nodular heterotopia, seizures, morbid obesity, and a pelvic kidney. Genome sequencing (GS) revealed a MED12L variant, NM_053002.5:c.3559+2T>G. Both computational models and transcriptomic analysis confirmed that this variant induced splice loss of MED12L exon 25. Probands 2 and 3 presented with overlapping phenotypes of developmental delay; sequencing confirmed c.3441_3444dup; p.(G1149Nfs*13) and seq[GRCh37] del(3)(q25.1q25.1) chr3:g.?_151075120 variants affecting MED12L. Further investigation found diploid-triploid mosaicism in Proband 1, supporting the hypothesis that loss of MED12L function may increase risk for other cytogenetic abnormalities. Probands 2 and 3 did not harbor evidence of additional cytogenetic aberrations. In Proband 1, caloric restriction and semaglutide-pramlintide combination therapy were started at age eight and were effective in weight reduction. Overall, this report expands the phenotypic spectrum of Nizon-Isidor syndrome, highlights a potential link between MED12L and cytogenetic abnormalities, and demonstrates a case of weight loss through GLP-1 therapy in a child with a genetic obesity syndrome.
尼宗 - 伊西多尔综合征是一种由MED12L基因杂合变异引起的罕见疾病,文献中仅有8例记录。在此,我们报告另外3例该综合征病例。先证者1是一名7岁女性,表现为发育迟缓、右腿半侧肥大、喉裂、内斜视、皮肤色素沉着异常、扇形虹膜色素减退、吞咽困难、脑室周围结节性异位、癫痫发作、病态肥胖和盆腔肾。基因组测序(GS)发现一个MED12L变异,NM_053002.5:c.3559+2T>G。计算模型和转录组分析均证实该变异导致MED12L外显子25的剪接缺失。先证者2和3表现出重叠的发育迟缓表型;测序证实存在c.3441_3444dup;p.(G1149Nfs*13)以及seq[GRCh37] del(3)(q25.1q25.1) chr3:g.?_151075120变异影响MED12L。进一步研究发现先证者1存在二倍体 - 三倍体嵌合体,支持MED12L功能丧失可能增加其他细胞遗传学异常风险的假说。先证者2和3未发现其他细胞遗传学异常的证据。在先证者1中,8岁时开始采用热量限制和司美格鲁肽 - 普兰林肽联合治疗,对体重减轻有效。总体而言,本报告扩展了尼宗 - 伊西多尔综合征的表型谱,突出了MED12L与细胞遗传学异常之间的潜在联系,并展示了一名患有遗传性肥胖综合征儿童通过GLP - 1治疗实现体重减轻的病例。