Comp B-Seattle Children's Care and Outcomes Registry for Spina Bifida

描述（申请人提供）：脊柱裂（Spina bifida，简称SB）是一种严重的出生缺陷，是神经管缺陷（神经管缺陷）中最常见的一种。2002年，0至19岁儿童和青少年的SB患病率为3.1 / 10,000 （Shin, 2010）。本提案旨在建立在西雅图儿童医院（SCH）神经发育（NDV）诊所接受治疗的所有SB儿童的前瞻性患者登记。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在0 -22年参加NDV诊所或在原理图接受住院治疗,谁有合格的诊断的某人,谁计划回到诊所至少一次在未来12个月内将有资格参加。每位参与者将在每年一次的年度访问中收集数据，使用记录在医院电子和纸质病历中的数据。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): Spina bifida (SB) is a serious birth defect, and is the most common of the neural tube defects (NTDs). The prevalence of SB among children and youth ages 0 to 19 years old in 2002 was 3.1 per 10,000 children (Shin, 2010). This proposal is designed to establish a prospective patient registry of all children with SB who receive care at Seattle Children's Hospital (SCH) Neurodevelopmental (NDV) Clinic. 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 years who attend NDV clinic or receive inpatient care at SCH, who have an eligible diagnosis of SB, and who plan to return to clinic at least once in the next 12 months will be eligible to participate. Dta will be collected for each participant at one annual visit per year, using data recorded in the hospital electronic and paper medical record. 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.