Medical Genetics Branch, National Human Genome Research Institute, National Institutes of Health, Bethesda, Maryland.
Am J Med Genet C Semin Med Genet. 2018 Jun;178(2):246-257. doi: 10.1002/ajmg.c.31616. Epub 2018 May 15.
Nonchromosomal, nonsyndromic holoprosencephaly (NCNS-HPE) has traditionally been considered as a condition of brain and craniofacial maldevelopment. In this review, we present the results of a comprehensive literature search supporting a wide spectrum of extracephalic manifestations identified in patients with NCNS-HPE. These manifestations have been described in case reports and in large cohorts of patients with "single-gene" mutations, suggesting that the NCNS-HPE phenotype can be more complex than traditionally thought. Likely, a complex network of interacting genetic variants and environmental factors is responsible for these systemic abnormalities that deviate from the usual brain and craniofacial findings in NCNS-HPE. In addition to the systemic consequences of pituitary dysfunction (as a direct result of brain midline defects), here we describe a number of extracephalic findings of NCNS-HPE affecting various organ systems. It is our goal to provide a guide of extracephalic features for clinicians given the important clinical implications of these manifestations for the management and care of patients with HPE and their mutation-positive relatives. The health risks associated with some manifestations (e.g., fatty liver disease) may have historically been neglected in affected families.
非染色体性、非综合征性全前脑畸形(NCNS-HPE)传统上被认为是一种脑和颅面发育不良的疾病。在这篇综述中,我们展示了全面文献检索的结果,这些结果支持了在 NCNS-HPE 患者中发现的广泛的颅外表现。这些表现已经在病例报告和“单基因”突变的大量患者队列中被描述过,这表明 NCNS-HPE 的表型可能比传统观念更复杂。很可能,一个相互作用的遗传变异和环境因素的复杂网络导致了这些偏离 NCNS-HPE 中常见的脑和颅面发现的系统性异常。除了由于脑中线缺陷导致的垂体功能障碍的系统后果(作为直接结果)之外,我们在这里还描述了一些影响各种器官系统的 NCNS-HPE 的颅外表现。我们的目标是为临床医生提供颅外特征指南,因为这些表现对 HPE 患者及其突变阳性亲属的管理和护理具有重要的临床意义。一些表现(如脂肪肝疾病)相关的健康风险在受影响的家庭中可能在历史上被忽视了。