National Spina Bifida Patient Registry-Clinic Demonstration Project

国家脊柱裂患者登记处-诊所示范项目

• 批准号: 8510393
• 负责人: BRAD E. DICIANNO
• 金额: $ 7万
• 依托单位: UNIVERSITY OF PITTSBURGH AT PITTSBURGH
• 依托单位国家: 美国
• 财政年份: 2011
• 资助国家: 美国
• 起止时间: 2011-09-01 至 2014-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8510393
• 关键词: National; Spina; Bifida; Patient; Registry

DESCRIPTION (provided by applicant): This proposal aims to establish a feasible site of data collection through the use of a standardized registry tool and a shared computerized reporting and data-processing system developed by the SB Association of America for use by the CDC as a national SB (SB) patient registry. The University of Pittsburgh Medical Center (UPMC) Adult SB Clinic and SB Transition Clinic as well as the Pediatric SB Clinic at Children's Hospital of Pittsburgh will jointly recruit patients for this project. At least 125 patients per year over a 3 year period will be recruited. Potential future research aims are also proposed which will use data obtained from the registry in a study to evaluate the impact of an evidence-based Wellness Program on medical outcomes, cost of care, and health care utilization through a unique partnership with UPMC Health Plan, a major health insurance services division.

描述（由申请人提供）：本提案旨在通过使用标准化登记工具和由美国SB协会开发的共享计算机化报告和数据处理系统建立一个可行的数据收集网站，供CDC用作国家SB（SB）患者登记处。匹兹堡大学医学中心（UPMC）成人SB诊所和SB过渡诊所以及匹兹堡儿童医院的儿科SB诊所将联合招募该项目的患者。3年内每年将招募至少125名患者。还提出了未来潜在的研究目标，该目标将使用从登记处获得的数据，通过与UPMC健康计划（一个主要的健康保险服务部门）的独特合作关系，评估循证健康计划对医疗结果、护理成本和医疗保健利用率的影响。