The UAB Spina Bifida Registry Longitudinal Data Collection and Evaluation Study

描述（由申请人提供）：疾病预防控制中心认识到登记的需要和好处，以促进SB个人在所有卫生保健领域的进步，并建立了资助机会FOA DD 08 - 001，创建了国家SB患者登记处。该计划的目标是提高医疗保健质量，并了解SB患者的人口统计学和特征。登记研究项目的结构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伯明翰亚拉巴马大学（UAB）和辛辛那提儿童医院与Ground Zero Software的程序员合作，为SB开发了一个名为Webtracker的诊断特定EMR。Webtracker被设计为可以被诊所普遍使用的SB EMR，以及嵌入到EMR中的数据点的存储库。该项目的II期，由FOA DD 08 -001资助;包括9个研究中心，选择这些研究中心提交至少125例患者的数据，为期3年，共计375份个人年度记录表。截至2011年2月15日，UAB已收集了280例儿科患者的数据，年度报告超过400份。除了收集儿科患者的数据外，我们现在还在收集成年人群的数据。2010年10月，我们开始为成人SB诊所配备人员，迄今为止，我们已经收集了14名成人患者的数据。UAB致力于该项目的下一阶段FOA RFA-DD-11-005，该阶段将继续收集在资助机会FOA DD 08 -001中开始的患者人群数据。这一延续将允许对过去三年中目前已跟踪的患者进行纵向数据收集，并继续将新患者添加到登记研究中。通过增加纵向数据，我们将能够为SB患者人群的结局、最佳实践和临床干预做出贡献。

DESCRIPTION (provided by applicant): The CDC recognized the need and benefits of a registry to promote advances in all areas of health care for individuals with SB and established funding opportunity FOA DD08-001creating a National SB 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 SB. 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 EMR for SB called Webtracker. Webtracker was designed to function as a SB 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 SB 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 SB patient population.