Seattle Children's Hospital Spina Bifida Registry

描述：（由申请人提供）脊柱裂是一种严重的先天性缺陷，是神经管缺陷中最常见的一种。截至2001年，每10万名活产婴儿中有20.09人在出生时被诊断患有SB（疾病控制中心，2002年）。本建议为所有在儿童医院和地区医疗中心（CHMRC）神经发育（NDV）诊所或住院治疗的SB儿童建立前瞻性患者登记。该项目的目标是：1)为在新城疫诊所接受治疗的SB儿童和青少年建立SB登记，2)确定SB儿童和青少年护理的最佳做法，以及3)确定SB的未来研究领域。年龄在0 -22岁的儿童，在新城疫诊所或在CHRMC接受住院治疗，诊断为SB或相关神经管疾病。计划在未来12个月内至少返回诊所一次的人将有资格参加登记。每位参与者的数据将在三年的时间里每年进行一次访问，使用记录在医院电子和纸质病历中的数据。注册电子病历（EMR）将用于访问注册问题和输入注册数据。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。脊柱裂（SB）是一种严重的出生缺陷，是美国儿童残疾的主要来源。患有SB的人一生中通常会受到许多复杂的医疗问题的影响，其综合疗效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.