National Spina Bifida Registry Longitudinal Data Collection and Evaluation

项目摘要/摘要 目标：这项提议的目的是继续与疾病中心合作 控制和预防脊椎裂等专科门诊继续试点国家专项疾病 登记以改善对脊柱裂患者的护理。 具体目标：1)继续在超过125名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 以及预防和其他受资助者示范方案，以评估和改进拟议的国家 脊柱裂登记工具，以及3)与其他受赠人方案合作，调查 脊柱裂患者的人口学特征、干预措施和结果。 背景：脊柱裂是最常见的永久性致残出生缺陷，估计有7万 患有这种神经管缺陷的更显著形式的个体。关于医疗服务的研究 可用于脊柱裂患者的研究发现，对脊柱裂有反应的诊所之间存在显著差异 关于服务的病人数量、可提供的特殊护理的类型、临床会议的频率以及 提供的护理协调级别。该脊柱裂注册示范项目是一项试点计划，旨在 建立一个全国性的临床登记系统，以评估不同诊所之间的可变性，并根据结果进行评估 医疗护理。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，并继续获得临床、管理和研究支持 有必要继续成为示范节目之一。 方法：使用标准化的疾控中心表格和电子登记处，每年将从 在发育和行为科多学科脊柱裂中心就诊的患者 辛辛那提儿童医院医疗中心的儿科医生。

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.