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

描述（由申请人提供）：脊柱裂（SB）是一种严重的出生缺陷，是最常见的神经管缺陷（NTDs）。2002年，0 - 19岁儿童和青少年中SB的患病率为3.1/10，000名儿童（Shin，2010）。本提案旨在建立一个前瞻性患者登记册，登记在西雅图儿童医院（SCH）神经发育（NDV）诊所接受治疗的所有SB儿童。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，参加NDV诊所或在SCH接受住院治疗，有合格的SB诊断，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。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位受试者的数据。数据分析将由登记协调委员会指导，并将确定SB护理的最佳实践和登记的未来改进。

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.