Seattle Childrens Hospital Spina Bifida Registry

描述（申请人提供）：SB是一种严重的出生缺陷，是神经管缺陷（NTDs）中最常见的。截至2001年，美国每10万名活产婴儿中有20.09人在出生时被诊断为SB （CDC, 2009）。发现治疗SB和控制其症状的最佳方法非常重要。本提案旨在建立在西雅图儿童医院（SCH）神经发育（NDV）诊所或住院服务部门接受治疗的所有SB儿童的前瞻性患者登记。创建一个SB儿童的注册表将收集信息，我们可以使用这些信息来确定哪种治疗方法最有效，SB儿童会出现哪些问题，以及SB在一生中是如何发展的。该项目的目标是：1)建立与某人某人注册表同步信道的儿童和青少年接受在NDV治疗诊所,2)来确定最佳实践与某人照顾儿童和青少年,和3)识别领域未来的研究关于某人的孩子年龄0-22参加NDV诊所或在原理图接受住院治疗,诊断为某人或神经管疾病相关,和那些打算回到诊所至少一次在未来12个月内将有资格参加注册表。每位参与者的数据将在三年的时间里每年进行一次访问，使用记录在医院电子和纸质病历中的数据。注册电子病历（EMR）将用于访问注册问题和输入注册数据。数据分析将由登记协调委员会指导，并将确定SB护理的最佳做法和登记的未来改进。

DESCRIPTION (provided by applicant): SB is a serious birth defect, and is the most common of the neural tube defects (NTDs). As of 2001, 20.09 in 100,000 live births in the US were diagnosed with SB at birth (CDC, 2009). It is important to discover the best ways to treat SB and manage its symptoms. This proposal is to establish a prospective patient registry of all children with SB who receive care at Seattle Children's Hospital (SCH) Neurodevelopmental (NDV) Clinic or inpatient services. Creating a registry for children with SB will gather information that we can use to determine which treatments are most effective, which problems children with SB develop, and how SB develops over the lifespan. The objectives of this project are: 1) To establish a SB registry at SCH for children and adolescents with SB who receive care at NDV clinic, 2) To identify best practices for the care of children and adolescents with SB, and 3) To identify areas of future research regarding SB. Children ages 0-22 who attend NDV clinic or receive inpatient care at SCH, who have a diagnosis of SB or related neural tube disorder, and who plan to return to clinic at least once in the next 12 months will be eligible to participate in the registry. Data will be collected for each participant at one annual visit per year for three years, using data recorded in the hospital electronic and paper medical record. The registry electronic medical record (EMR) will be used to access registry questions and to enter registry data. Data analysis will be guided by the registry coordinating committee, and will be to identify best practices for SB care and future improvements to the registry.