National Spina Bifida Patient Registry-Clinic Demonstration Project

描述（由申请人提供）：本提案旨在通过使用标准化注册工具和由美国SB协会开发的共享计算机报告和数据处理系统，建立一个可行的数据收集站点，供CDC用作国家SB （SB）患者注册。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诊所将共同为该项目招募患者。在3年的时间里，每年至少招募125名患者。潜在的未来研究目标也被提出，将在一项研究中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，评估循证健康计划对医疗结果、护理成本和医疗保健利用的影响。

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.