The UAB Spina Bifida Registry Longitudinal Data Collection and Evaluation Study

项目摘要 疾病预防控制中心认识到登记册的必要性和好处，以促进各领域的进步 脊柱裂患者的医疗保健和既定的资助机会FOA DD 08 - 001创建国家脊柱裂患者登记处。这项倡议的目标是 是为了提高医疗保健的质量， 脊柱裂患者的人口统计学和特征。的架构 登记册项目可分为三个主要阶段。 在项目的第一阶段，亚拉巴马儿童医院与大学 伯明翰（UAB）的亚拉巴马儿童医院和辛辛那提儿童医院 与Ground Zero软件公司的程序员合作， 一个专门针对脊柱裂的电子病历（EMR），名为“网络搜寻家”。 “网路搜寻家”被设计成一个脊柱裂的电子病历， 普遍由诊所，以及作为数据点的存储库， 到EMR。 该项目的第二阶段由FOA DD 08 -001资助;包括9个研究中心 他们被选中提交至少125名患者的数据，为期三年， 375个人年度记录表。截至2011年2月15日，UAB收集了以下数据： 儿科环境中的280例患者，年度报告> 400份。除了收集 我们现在正在收集成年人的数据。在 2010年10月，我们开始为成人脊柱裂诊所配备人员，迄今为止，我们已经 收集了14名成年患者的数据。 UAB致力于该项目的下一阶段，FOA RFA-DD-11-005， 继续收集在FOA资助机会中开始的患者人群的数据 DD08-001这种延续将允许对患者进行纵向数据收集， 目前已跟踪了过去三年，以及继续增加新的 患者登记。通过添加纵向数据，我们将能够 有助于制定脊柱的结果、最佳实践和临床干预措施 裂患者人群。

Project Summary The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with Spina Bifida and established funding opportunity FOA DD08-001creating a National Spina Bifida Patient Registry. The goal of this initiative was to improve the quality of healthcare as well as to gain an understanding of the demographics and characteristics of individuals with Spina Bifida. The structure for the registry project can be classified into three major phases. During phase I of the project, The Children's Hospital of Alabama with The University of Alabama at Birmingham (UAB) and The Children's Hospital of Cincinnati collaborated with programmers from Ground Zero Software to develop a diagnosis specific electronic medical record (EMR) for Spina Bifida called Webtracker. Webtracker was designed to function as a Spina Bifida EMR that could be used universally by clinics as well as to be the repository for data points which were embedded into to the EMR. Phase II of this project which was funded under FOA DD08-001; consisting of 9 sites which were selected to submit data on a minimum of 125 patients for three years totaling 375 individual annual record forms. As of February 15, 2011, UAB has collected data on 280 patients in the pediatric setting with > 400 annual reports. In addition to collecting data on our pediatric patients we are now collecting data on our adult population. In October 2010, we began staffing an adult Spina Bifida clinic and to date, we have collected data on 14 adult patients. UAB is committed to the next phase of this project, FOA RFA-DD-11-005, which is to continue to collect data on the patient population started in funding opportunity FOA DD08-001. This continuation will allow longitudinal data collection on patients that have currently been tracked for the past three years as well as to continue to add new patients into the registry. Through adding to the longitudinal data, we will be able to contribute to developing outcomes, best practices, and clinical interventions for the Spina Bifida patient population.