The Feasibility of a Longitudinal Spina Bifida Registry in Wisconsin

描述(由申请人提供)：SB是儿童和成人中最常见的残疾原因之一。在威斯康星州，大约有1400人与SB一起生活。SB患者的医疗保健是复杂的，涉及多个身体、学习和心理社会问题。然而，关于SB临床护理的纵向数据很少。该项目的总体目标是测试利用国家标准化登记工具来收集CHW和合作成人诊所SB计划中SB患者的纵向数据的可行性。该项目的具体目标是：具体目标1：使国家小岛屿发展中国家改革方案的核心组成部分投入运作。具体地说，a.招募、同意和/或保留150-200名参与NSBPR威斯康星州SB计划的患者，捕获用于年度临床会面的患者数据，并将数据传输到中央数据库。B.在疾病预防控制中心协调委员会和临床数据委员会提供代表，为国家项目的总体方向做出贡献，并确定合作研究的机会。C.继续探索将CDC SB EMR的使用整合到SB计划活动中的具体目标2.开发和试行可能有助于扩展NSBPR的其他组件/策略。具体地说，a.继续收集和分析特定于现场的附加信息。B.制定并试行一套过渡项目，供所有过渡到成人SB计划的青年收集。C.将NSBPR活动整合到SB计划工作人员的工作中并对其进行评估，以增强NSBPR的可持续性，并扩大其对威斯康星州计划的有用性。这项为期2年9个月的纵向描述性研究将在Pi Kathen Sawin博士、CPNP-PC、FAAN的领导下，与SB计划的医学主任John Thometz医学博士和RN医学硕士Karen Rauen合作进行。这些数据将从患者/家属面谈和现有的医疗记录中提取，用于每年的探视。收集的数据元素包括参与者的人口统计数据、临床数据，如健康和手术史，以及选定的测量数据。所有上传到该登记处的数据在发送到疾控中心时都将被取消身份。CDC协调委员会将为数据分析和总体项目指导提供指导。

DESCRIPTION (provided by applicant): SB is one of the most common causes of disability among children and adults. Approximately 1,400 people are living with SB in Wisconsin. Health care for persons with SB is complex and involves multiple physical, learning, and psychosocial issues. Yet little longitudinal data is available regarding clinical care in SB. The overall goal of this project is to test the feasibility of utilizing a national standardized registry tool to collect longitudinal data on patients with SB in the SB Program at CHW and collaborating adult clinics. The specific aims of this project are to: Specific Aim 1: Operationalize the core components of the NSBPR. Specifically a. Recruit, consent and/or retain 150-200 patients in participating Wisconsin SB Programs for the NSBPR, capture patient data for annual clinical encounters, and transmit data to a central data repository. b. Provide representation on the CDC Coordinating Committee and The Clinical Data Committee, contribute to the overall direction of the national project, and identify collaborative research opportunities. c. Continue to explore ways to integrate use of CDC SB EMR into SB program activities Specific Aim 2. Develop and pilot test additional components/strategies that may be useful for expansion of the NSBPR. Specifically, a. Continue to collect and analyze the site-specific additional information. b. Develop and pilot test a set of transition items to be collected for all youth transitioning to the adult SB program. c. Integrate and evaluate the NSBPR activities into the work of the SB program staff in order to enhance the sustainability of NSBPR and expand its usefulness to the Wisconsin programs. This 2-year 9-month longitudinal descriptive study will be carried out under the leadership of study PI Kathleen Sawin, PhD, CPNP-PC, FAAN in collaboration with the Medical Director of the SB Program, John Thometz, MD and Karen Rauen, MS, RN. The data will be extracted for annual visits from patient/family interviews and existing medical records. Data elements collected include participant demographics, clinical data such as health and surgical history, and select measurements. All data uploaded to this registry will be de-identified when sent to CDC. Guidance for data analysis as well as overall project direction will be provided by CDC Coordinating Committee.