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

描述(申请人提供)：脊柱裂(SB)是一种严重的出生缺陷，也是最常见的神经管缺陷(NTDS)。2002年，0至19岁儿童和青年中的SB流行率为每10,000名儿童中有3.1人(Shin，2010年)。这项提案旨在为所有在西雅图儿童医院(SCH)神经发育(NDV)诊所接受护理的SB儿童建立一个预期的患者登记。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，如果被诊断为符合条件的SB，并计划在未来12个月内至少返回诊所一次，将有资格参加。将使用医院电子和纸质医疗记录中记录的数据，在每年一次的年度访问中收集每位参与者的DTA。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): 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.