The Feasibility of a Longitudinal Spina Bifida Registry in Wisconsin

描述（由申请人提供）：SB是儿童和成人残疾的最常见原因之一。大约有1,400人与SB一起生活在威斯康星州。SB患者的医疗保健很复杂，涉及多种身体、学习和心理社会问题。然而，很少有纵向数据是关于SB的临床护理。本项目的总体目标是测试的可行性，利用国家标准化的注册工具，收集SB患者的纵向数据在SB计划在CHW和合作的成人诊所。具体目标1：实施《国家可持续商业伙伴关系战略》的核心组成部分。具体来说，A。在参与NSBPR的威斯康星州SB计划中招募、同意和/或保留150-200例患者，采集患者数据用于年度临床就诊，并将数据传输至中央数据存储库。B.在CDC协调委员会和临床数据委员会提供代表，有助于国家项目的总体方向，并确定合作研究的机会。C.继续探索如何将CDC SB EMR的使用纳入SB计划活动具体目标2。开发和试点测试可能有助于扩大NSBPR的其他组件/战略。具体来说，A。继续收集和分析现场特定的附加信息。B.开发和试点测试一套过渡项目，收集所有青年过渡到成人SB计划。C.将NSBPR活动整合并评估到SB计划工作人员的工作中，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研究PI Kathleen Sawin，PhD，CPNP-PC，FAAN的领导下与SB项目的医学总监John Thometz，MD和Karen Rauen，MS，RN合作进行。将从患者/家属访谈和现有病历中提取数据，用于年度访视。收集的数据元素包括参与者人口统计学、临床数据（如健康和手术史）和选择的测量值。所有上传至该登记系统的数据在发送至CDC时将被去识别。CDC协调委员会将提供数据分析指南和总体项目方向。

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.