Seattle Childrens Hospital Spina Bifida Registry

描述(申请人提供)：SB是一种严重的出生缺陷，是最常见的神经管缺陷(NTDS)。截至2001年，美国每100,000名活产儿中有20.09人在出生时被诊断出患有SB(疾控中心，2009年)。找到治疗某人的最佳方法并管理其症状是很重要的。这项提议是为所有在西雅图儿童医院(SCH)神经发育(NDV)诊所或住院服务接受护理的SB儿童建立一个预期的患者登记。为SB儿童创建一个登记表将收集信息，我们可以使用这些信息来确定哪些治疗最有效，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)在SCH为在新城疫诊所接受SB护理的儿童和青少年建立SB登记，2)确定照顾SB儿童和青少年的最佳做法，3)确定关于SB的未来研究领域。在新城疫诊所就诊或在新城疫医院接受住院治疗的0-22岁儿童，被诊断为SB或相关神经管疾病，并计划在未来12个月内至少返回临床一次，将有资格参加登记。将使用医院电子和纸质医疗记录中记录的数据，在为期三年的每年一次的访问中收集每个参与者的数据。登记处电子病历将用于查阅登记处问题和输入登记处数据。数据分析将在登记册协调委员会的指导下进行，以确定SB护理的最佳做法和今后对登记册的改进。

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.