Seattle Childrens Hospital Spina Bifida Registry

描述（由申请人提供）：SB是一种严重的出生缺陷，是最常见的神经管缺陷（NTD）。截至2001年，美国每10万例活产婴儿中有20.09例在出生时被诊断为SB（CDC，2009）。重要的是要找到治疗SB和管理其症状的最佳方法。该提案旨在建立一个前瞻性的患者登记处，登记所有在西雅图儿童医院（SCH）神经发育（NDV）诊所或住院服务机构接受治疗的SB儿童。为SB儿童建立一个登记处将收集信息，我们可以用这些信息来确定哪种治疗方法最有效，SB儿童发展出哪些问题，以及SB在生命周期中如何发展。该项目的目标是：1）在SCH为在NDV诊所接受护理的SB儿童和青少年建立SB登记处，2）确定SB儿童和青少年护理的最佳实践，以及3）确定未来关于SB的研究领域。0-22岁的儿童谁参加NDV诊所或在SCH接受住院治疗，被诊断为SB或相关神经管疾病，并且计划在未来12个月内至少返回诊所一次的患者将有资格参加登记研究。将使用医院电子和纸质病历中记录的数据，在每年一次年度访视时收集每名受试者的数据，持续3年。登记研究电子病历（EMR）将用于访问登记研究问题和输入登记研究数据。数据分析将由登记协调委员会指导，并将确定SB护理的最佳实践和登记的未来改进。

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.