Blake Kim D, Salem-Hartshorne Nancy, Daoud Marie Abi, Gradstein Janneke
Department of Pediatrics, IWK Health Centre, Dalhousie University, NS, Canada.
Clin Pediatr (Phila). 2005 Mar;44(2):151-9. doi: 10.1177/000992280504400207.
Very little information has been published about adolescents and older individuals with Coloboma, Heart defects, Atresia choanae, Retarded growth and development, Genital hypoplasia, Ear anomalies and deafness (CHARGE) syndrome. This paper describes the results of a study that identifies the unique issues faced by adolescents and adults with CHARGE. Descriptive information was gathered from parents of patients with CHARGE, and/or the patients themselves, about their developmental, medical, educational, and social history. The resulting body of information provides important insights into the prognosis and special needs of individuals with CHARGE, as well as further research questions.
关于患有眼缺损、心脏缺陷、后鼻孔闭锁、生长发育迟缓、生殖器发育不全、耳部异常和耳聋（CHARGE）综合征的青少年及成年人的报道非常少。本文描述了一项研究的结果，该研究确定了患有CHARGE综合征的青少年和成年人所面临的独特问题。从CHARGE综合征患者的父母和/或患者本人那里收集了关于他们发育、医疗、教育和社会历史的描述性信息。这些信息为了解CHARGE综合征患者的预后和特殊需求以及进一步的研究问题提供了重要的见解。
