Spina Bifida (SB), a group of congenital conditions caused by malformations in the neural tube development early in pregnancy, is one of the most common disabling conditions in our country today. These conditions result in a wide range of spinal cord and central nervous system impairments that affect many body systems. Further complicating the care of persons with SB is the absence of knowledge regarding the prevalence or severity of the potential health issues across clinical programs and the significant variance in health outcomes. The National Spina Bifida Patient Registry (NSBPR) was developed to address this gap. The goal of this Wisconsin application is to collect and improve data quality of the longitudinal data collected from children and adolescents with SB. The analysis of the pooled data in the NSBPR will be used to identify health care and clinic practices that are associated with the best outcomes for people living with SB. The project has three aims.
The first aim addresses the core components of the NSBPR, enrolling/and or maintaining 90% of our combined clinics? population (in year 5, n=270), collecting annual data, and providing basic data on eligible but not enrolled patients.
The second aim focuses on the administrative and clinical activities aimed at improvement of NSBPR data, actively participating in Coordinating Committee meetings, NSBPR committees, work groups, and CDC and training, conducting data quality assessment and evaluation activities, maintaining existing partnerships and establishing new partnerships, as needed to accomplish the goals of the NSBPR.
The third aim expands the research activities, pilot projects and analyses of NSBPR data at our site, and addresses dissemination of study results to professional and consumer audiences. Our site will continue to use the data collection instrument developed by the NSBPR (V2.6) for data collection and entry. Data is entered through a web-based system and primarily de-identified data are provided to Centers for Disease Control and Prevention (CDC). Analyses of the NSBPR data will be guided by the Coordinating Committee and the Committee for Science and Publications of NSBPR sites and involve clinicians from the participating sites working with statisticians and scientists from CDC. To date, 15 manuscripts have emerged from this project that have begun to describe the population and variance in clinical outcomes across sites. A dissemination plan for consumers and professionals is included in this proposal. The expanded participation of the Wisconsin site in the NSBPR proposed in this application is expected to have a positive impact on the care of persons with SB. Further, it will provide a foundation for research that expands our understanding of the condition and its treatment. The outcome of this project is a database that can be used to describe variations in practice across settings, facilitate data analyses that is the basis for best practices in clinical care, and improves quality across programs.
With the changes in health care over the last two decades, individuals living with spina bifida can expect to live well into adulthood. However, living fully with spina bifida into adulthood can only be realized with an accurate knowledge of the health status of those living with spina bifida and interventions that are known to yield best outcomes. The National Spina Bifida Patient Registry, using Wisconsin data and that of other collaborating programs, will provide critical information about child and adult health status and healthcare practices that are associated with the best outcomes for those living with spina bifida. This data will provide the foundation for future interventions that promote the health and well-being of those with this disability (HP 2020 goal).
