The Feasibility of a Longitudinal Spina Bifida Registry in Wisconsin

点击翻译按钮获取中文摘要

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.