National Spina Bifida Registry Longitudinal Data Collection and Evaluation

项目总结/摘要 目的：本提案的目的是继续与疾病中心合作 防治中心和其他受赠脊柱裂诊所继续试点一种全国性的特定疾病 改善脊柱裂患者的护理。 具体目标：1）继续在超过125名参加脊柱裂治疗的患者中试用脊柱裂登记工具。 辛辛那提多学科脊柱裂诊所，2）与疾病控制中心合作 和预防和其他赠款示范方案，以评估和改善拟议的国家 脊柱裂登记工具，和3）与其他受赠方计划合作，调查 脊柱裂患者的人口统计学、干预措施和结局。 背景：脊柱裂是最常见的永久性致残性出生缺陷，估计有70，000 患有这种神经管缺陷的更严重形式的个体。医疗服务研究 脊柱裂患者的可用性发现，在响应脊柱裂诊所之间存在显著差异 关于所服务的患者数量、可提供的专科护理类型、门诊频率，以及 提供的护理协调水平。脊柱裂登记示范项目是一个试点项目，旨在 制定国家临床登记，以评估各诊所的变异性，并评估基于结果的 医疗等辛辛那提儿童医院脊柱裂中心被选为九个中心之一， 试行脊柱裂登记，并继续提供临床、行政和研究支持 必须继续成为示范项目之一。 方法：使用标准化的CDC表格和电子注册表，每年从 患者参加多学科脊柱裂中心在发展和行为的部门 辛辛那提儿童医院医疗中心的儿科。

Project Summary/Abstract Objective: The purpose of this proposal is to continue to work collaboratively with the Centers for Disease Control and Prevention and other grantee spina bifida clinics to continue to pilot a disease specific national registry to improve care for individuals with spina bifida. Specific Aims: 1) Continue to pilot the spina bifida registry tool on greater than 125 patients attending the Cincinnati multi-disciplinary spina bifida clinic, 2) Work collaboratively with the Centers for Disease Control and Prevention and other grantee demonstration programs to evaluate and improve the proposed national spina bifida registry tool, and 3) Cooperate with other grantee programs to investigate associations among demographics, interventions, and outcomes in individuals with spina bifida. Background: Spina bifida 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 spina bifida found significant variability among the responding spina bifida clinics regarding the number of patients served, types of specialty care available, frequency of clinic sessions, and level of care coordination offered. This Spina Bifida 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 Spina Bifida Center was chosen as one of the nine centers to pilot the Spina Bifida 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 Spina Bifida Center in the Division of Developmental and Behavioral Pediatrics at the Cincinnati Children's Hospital Medical Center.