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 overall goal of this project is improving the care of individuals living with SB. Our continued active participation in the NSBPR will address this goal. The project has two aims.
The first aim i s to extend participation in the core components of the NSBPR. Specifically, over the next five years we will collect and submit NSBPR data from 200 enrolled and actively maintained participants with SB in the SB Programs at Children's Hospital of Wisconsin and its collaborating adult clinics at the Froedtert Memorial Lutheran Hospital/Medical College of Wisconsin. Further, we will participate in data quality assessments, provide basic data on eligible patients who are not enrolled in the NSBPR, implement the evaluation and dissemination plans and participate in the NSBPR Coordinating Committee.
The second aim addresses expansion of the research activities. Specifically, we will generate two research questions/hypotheses for NSBPR data, develop the research plan with collaborators both within Wisconsin programs and across the NSBPR sites, and disseminate findings and translate the findings of NSBPR analyses to practice. Finally, we will develop and pilot test select additional components that may be useful for expansion of the NSBPR. The two research studies included in this proposal are, """"""""Factors Predicting Pressure Ulcers in Children and Adults with Spina Bifida"""""""" and """"""""Measuring Body Composition in Children with Spina Bifida."""""""" Our site will continue to use the data collection instrument developed by the NSBPR (V2) 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 of NSBPR sites and involve clinicians from the participating sites working with statisticians and scientists from CDC. A detailed 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 s 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 14 other programs, will provide critical information about both child and adult health status and provide the foundation for future interventions that promote the health and well-being of those with this disability (HP 2020 goal).