National Spina Bifida Patient Registry-Clinic Demonstration Project

描述(由申请人提供)：这项建议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来建立一个可行的数据收集地点，供疾病预防控制中心用作国家SB(SB)患者登记。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诊所将联合为该项目招募患者。将在3年内每年招募至少125名患者。还提出了未来可能的研究目标，将在一项研究中使用从注册中心获得的数据，通过与主要医疗保险服务部门UPMC Health Plan的独特合作伙伴关系，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.