Spina Bifida Registry Demo Project

描述：(申请人提供)这项提议的目的是与疾病控制和预防中心和其他受资助的脊柱裂诊所合作，试行一项特定疾病的国家登记，以改善对脊柱裂患者的护理。具体目标：1.)在辛辛那提多学科脊柱裂诊所的至少125名患者上进行试点测试脊柱裂登记工具。2.)与疾病控制和预防中心和其他受赠者示范计划合作，评估和改进拟议的国家脊柱裂登记工具。背景：脊柱裂是最常见的永久性致残出生缺陷，估计有7万人患有这种神经管缺陷的更重要的形式。一项对脊柱裂患者可获得的医疗服务的研究发现，在接受服务的患者数量、可提供的特殊护理类型、临床会议频率和提供的护理协调水平方面，响应的脊柱裂诊所之间存在显著差异。这个脊柱裂登记示范项目是一个试点项目，旨在开发一个全国性的临床登记，以评估不同诊所的可变性，并评估基于结果的医疗护理。辛辛那提脊柱裂诊所拥有成为试点示范项目之一所需的临床、管理和研究支持。方法：设施：数据将从辛辛那提儿童医院医学中心发育和行为儿科辛辛那提脊柱裂多学科诊所的患者中收集。这些诊所包括成人和儿科患者，并由发育儿科、神经外科、骨科、物理和泌尿科现场提供服务。诊所每年平均48周，每个月的前4个星期一开会。辛辛那提脊柱裂诊所的工作人员参加了2008年的临床调查。受试者：我们将在我们的327名患者中至少招募125名患者参加这一多地点试点登记项目。数据收集：我们将每年使用纸质收集工具或基于互联网的登记工具收集登记处信息。脊柱裂是最常见的永久性致残出生缺陷，估计有7万人患有这种神经管缺陷的更重要形式。脊柱裂患者接受多学科诊所的专门护理，这些诊所报告说，在接受服务的患者数量、可提供的专业护理类型、临床会议频率和提供的护理协调水平方面存在显著差异。最近的“脊柱裂循证实践：制定研究议程”研讨会确定，迫切需要更高质量的研究，涉及多个脊柱裂中心的更多受试者，并利用标准化的变量和结果衡量标准。这一脊柱裂患者登记示范项目是一个试点项目，旨在开发一个全国性的临床登记，以评估不同诊所的可变性，并评估基于结果的医疗护理。

DESCRIPTION: (Provided by applicant.) The purpose of this proposal is to work collaboratively with the Centers for Disease Control and Prevention and other grantee spina bifida clinics to pilot a disease specific national registry to improve care for individuals with spina bifida. Specific Aims: 1.) Pilot test the spina bifida registry tool on at least 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. 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 serviced, 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 Spina Bifida Clinic has the clinical, administrative, and research support necessary to become one of the pilot demonstration programs. Methods: Facility: Data will be collected from the patients attending the multi- disciplinary Cincinnati Spina Bifida Clinics in the Division of Developmental and Behavioral Pediatrics at the Cincinnati Children's Hospital Medical Center. The clinics include adult and pediatric patients and are serviced on-site by developmental pediatrics, neurosurgery, orthopedics, physiatry, and urology. The clinic meets the first 4 Mondays of each month for an average of 48 weeks per year. Staff of the Cincinnati Spina Bifida Clinic participated in the 2008 clinic survey. Subjects: We will enroll a minimum of 125 of our 327 patients in this multi-site pilot registry project. Data Collection: We will annually collect registry information using either paper collection tools or an internet-based registry tool. 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. Individuals with spina bifida receive specialized care from multi- disciplinary clinics which report significant variability in the number of patients serviced, types of specialty care available, frequency of clinic sessions, and level of care coordination offered. The recent "Evidence-Based Practice in Spina Bifida: Developing a Research Agenda" symposium determined there was an immediate need for higher quality research involving greater numbers of subjects across multiple spina bifida centers and utilizing standardized variables and outcome measures. This Spina Bifida Patient 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.