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: 8332085
• 负责人: David B Joseph
• 金额: $ 7万
• 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/8332085
• 关键词: UAB; Spina; Bifida; Registry; Longitudinal

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.

项目概要 CDC 认识到登记系统促进所有领域进步的必要性和好处 脊柱裂患者的医疗保健并建立了 FOA 资助机会 DD08-001创建国家脊柱裂患者登记处。该倡议的目标 旨在提高医疗保健质量并了解 脊柱裂患者的人口统计和特征。的结构为 登记项目可分为三个主要阶段。 在该项目的第一阶段，阿拉巴马州儿童医院与大学 阿拉巴马州伯明翰医院 (UAB) 和辛辛那提儿童医院 与归零软件的程序员合作开发诊断 脊柱裂的特定电子病历 (EMR) 称为 Webtracker。 Webtracker 被设计为可用作脊柱裂电子病历 (EMR) 被诊所普遍使用，并成为嵌入的数据点的存储库 进入 EMR。 该项目的第二阶段由 FOA DD08-001 资助；由9个站点组成 被选中提交三年内至少 125 名患者的数据 375 份个人年度记录表。截至 2011 年 2 月 15 日，UAB 已收集以下数据： 280 名儿科患者，有超过 400 份年度报告。除了收集 关于儿科患者的数据 我们现在正在收集成年人口的数据。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，即 继续收集 FOA 资助机会中开始的患者群体数据 DD08-001。这一延续将允许对患者进行纵向数据收集， 目前已经跟踪了过去三年，并且继续添加新的 患者进入登记处。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 二裂患者群体。