National Spina Bifida Registry Longitudinal Data Collection and Evaluation

描述（由申请人提供）：本提案的目的是继续与CDC和其他受赠SB诊所合作，继续试点疾病特异性国家登记，以改善SB患者的护理。1）继续在超过125名参加辛辛那提多学科SB诊所的患者中试用SB登记工具，2）与疾病预防控制中心和其他受资助者示范计划合作，评估和改进拟议的国家SB登记工具，3）与其他受资助者计划合作，调查SB患者的人口统计学、干预措施和结局之间的关联。SB是最常见的永久性致残性出生缺陷，估计有70，000人患有这种神经管缺陷的更重要形式。一项对SB患者提供的医疗服务的研究发现，在回应SB诊所的患者数量、提供的专科护理类型、诊所会议频率和提供的护理协调水平方面存在显著差异。SB登记示范项目是一个试点项目，旨在开发一个国家临床登记，以评估诊所间的变异性，并评估基于结果的医疗护理。辛辛那提儿童医院SB中心被选为SB登记试点的九个中心之一，并继续拥有继续成为示范项目之一所需的临床、行政和研究支持。研究方法：使用标准化的CDC表格和电子注册表，每年从辛辛那提儿童医院医学中心发育和行为儿科部多学科SB中心的患者中收集数据。

DESCRIPTION (provided by applicant): The purpose of this proposal is to continue to work collaboratively with the CDC and other grantee SB clinics to continue to pilot a disease specific national registry to improve care for individuals with SB. Specific Aims: 1) continue to pilot the SB registry tool on greater than 125 patients attending the Cincinnati multi-disciplinary SB clinic, 2) work collaboratively with the CDC and other grantee demonstration programs to evaluate and improve the proposed national SB registry tool, and 3) cooperate with other grantee programs to investigate associations among demographics, interventions, and outcomes in individuals with SB. Background: SB is the most common permanently disabling birth defect with an estimated 70,000 individuals living with the more significant forms of this neural tube defect. A study of medical services available to patients with SB found significant variability among the responding SB clinics regarding the number of patients served, types of specialty care available, frequency of clinic sessions, and level of care coordination offered. This SB Registry Demonstration Project is a pilot program aimed at developing a national clinical registry to assess variability across clinics and to evaluate outcomes-based medical care. The Cincinnati Children's Hospital SB Center was chosen as one of the nine centers to pilot the SB Registry and continues to have the clinical, administrative, and research support necessary to continue to be one of the demonstration programs. Methods: Using standardized CDC forms and an electronic registry, data will be collected annually from the patients attending the multi-disciplinary SB Center in the Division of Developmental and Behavioral Pediatrics at the Cincinnati Children's Hospital Medical Center.