Seattle Children's Hospital Spina Bifida Registry

说明：（由申请人提供） 脊柱裂（SB）是一种严重的出生缺陷，是神经管畸形（NTDs）中最常见的一种。截至2001年，每10万名活产婴儿中有20.09名在出生时被诊断患有SB（疾病控制中心，2002年）。这项建议是建立一个前瞻性的患者登记册的所有儿童SB谁接受照顾儿童医院和地区医疗中心（CHMRC）神经发育（NDV）诊所或住院服务。该项目的目标是：1）在CHRMC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CHRMC接受住院护理，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。脊柱裂（SB）是一种严重的出生缺陷，是美国儿童残疾的主要原因。SB患者通常在一生中受到许多复杂的医疗问题的影响，其综合有效性和长期影响的研究很少。SB患者登记将指导SB护理的最佳实践和SB临床研究的未来领域的确定。

DESCRIPTION: (Provided by applicant.) Spina bifida (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 were diagnosed with SB at birth (Centers for Disease Control, 2002). This proposal is to establish a prospective patient registry of all children with SB who receive care at Children's Hospital and Regional Medical Center (CHMRC) Neurodevelopmental (NDV) Clinic or inpatient services. The objectives of this project are: 1) To establish a SB registry at CHRMC 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 CHRMC, 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. Spina bifida (SB) is a serious birth defect, and is a major source of childhood disability in the United States. People with SB are typically affected by many complex medical problems throughout their lives, whose combined effectiveness and long term effects have been poorly studied. A SB patient registry will guide determination of best practices for SB care and future areas for SB clinical research.