National Spina Bifida Patient Registry - Duke Clinic Demonstration Project

描述(申请人提供)：疾控中心在SB协会专业咨询委员会的帮助下，开发了一套假设驱动的问题，开始以标准化的方式收集全国SB患者的数据。2008年，疾控中心招募了首批9家SB诊所，以测试多机构国家SB患者登记的可行性。两年后，它被证明是可行的，疾控中心呼吁更多的SB诊所加入临床注册，以进一步测试其可行性。

DESCRIPTION (provided by applicant): The CDC, with the help of the Professional Advisory Council of the SB Association, developed a set of hypothesis-driven questions to begin to collect data on SB (SB) patients nationwide in a standardized fashion. In 2008, an initial group of nine SB clinics were enrolled by the CDC to test the feasibility of a multi-institutional National SB Patient Registry. After two years, it has proven feasible, and the CDC is calling for additional SB clinics to join in the clinic registry to further test its feasibility.