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。在威斯康辛州，大约有1400人与SB一起生活。SB患者的医疗保健是复杂的，涉及多种身体、学习和社会心理问题。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收集CHW SB项目和合作成人诊所SB患者纵向数据的可行性。该项目的具体目标是：具体目标1：实施NSBPR的核心组成部分。a.为NSBPR招募、同意和/或保留150-200名参与威斯康星州SB项目的患者，为年度临床接触收集患者数据，并将数据传输到中央数据存储库。b.在CDC协调委员会和临床数据委员会中提供代表，为国家项目的总体方向做出贡献，并确定合作研究机会。c.继续探索将CDC SB电子病历纳入SB项目活动的方法。开发和试点测试可能对扩展NSBPR有用的其他组件/策略。a.继续收集和分析局点附加信息。b.开发和试点测试一套过渡项目，收集所有青少年过渡到成人SB项目。c.将NSBPR活动整合并评估到SB项目工作人员的工作中，以提高NSBPR的可持续性，并扩大其对威斯康星州项目的有用性。这项为期2年9个月的纵向描述性研究将在研究PI Kathleen Sawin， PhD, CPNP-PC， FAAN的领导下进行，并与SB项目的医学主任John Thometz， MD和Karen Rauen， MS， RN合作。数据将从患者/家属访谈和现有医疗记录中提取，用于年度访问。收集的数据元素包括参与者的人口统计数据、健康和手术史等临床数据以及选择的测量值。所有上传至此注册表的数据在发送至疾病控制中心后将被删除身份信息。CDC协调委员会将提供数据分析指导和总体项目方向。

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.