The UAB Spina Bifida Registry Longitudinal Data Collection and Evaluation Study

UAB 脊柱裂登记纵向数据收集和评估研究

• 批准号: 8237813
• 负责人: David B Joseph
• 金额: $ 5万
• 依托单位: UNIVERSITY OF ALABAMA AT BIRMINGHAM
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-30 至 2014-06-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8237813
• 关键词: UAB; Spina; Bifida; Registry; Longitudinal

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.

描述（由申请人提供）：美国疾病控制与预防中心认识到建立一个登记册的必要性和益处，以促进SB患者在所有医疗保健领域的进步，并建立了资助机会FOA dd08 -001创建国家SB患者登记册。这一举措的目标是提高医疗保健质量，并了解SB患者的人口统计和特征。注册项目的结构可分为三个主要阶段。在项目的第一阶段，阿拉巴马儿童医院、伯明翰阿拉巴马大学（UAB）和辛辛那提儿童医院与Ground Zero Software的程序员合作，为SB开发了一种名为Webtracker的诊断专用电子邮件记录。“网路搜寻家”被设计成一个SB电子病历，可以被诊所普遍使用，也可以作为嵌入电子病历的数据点的存储库。根据FOA DD08-001资助的该项目的第二期；由9个站点组成，这些站点被选中提交至少125名患者的数据，为期3年，总计375个个人年度记录表格。截至2011年2月15日，UAB已经收集了280名儿科患者的数据，并提供了400份年度报告。除了收集儿科病人的数据我们现在也在收集成年人的数据。2010年10月，我们开始为成人SB诊所配备人员，到目前为止，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，即FOA RFA-DD-11-005，该阶段将继续收集从FOA DD08-001资助机会开始的患者群体数据。这种延续将允许对过去三年跟踪的患者进行纵向数据收集，并继续将新患者添加到注册表中。通过增加纵向数据，我们将能够为SB患者群体开发结果、最佳实践和临床干预做出贡献。