.) Spina bifida is the most common permanently disabling birth defect in the United States. Medical care for people with spina bifida (PWSB) can be complex and long term. Improved understanding about care practices of spina bifida programs and about health outcomes associated with clinical practices is needed to improve outcomes and quality of life for PWSB. OHSU has a long history of addressing systems of care for PWSB, and this project builds on experience that includes systematic collection and evaluation of clinical data. Evidence from other complex and chronic conditions has shown that a National Patient Registry allows for comparison of outcome data among care centers and identification of strategies to improve outcomes. Assessment by the Spina Bifida Association in collaboration with other groups identified need for a national infrastructure to support clinical research and a systematic approach to improving quality of care for PWSB. This project takes a step towards a national patient registry. The long-term goal of this project is to improve health outcomes and quality of life for PWSB. This project contributes to building the clinical evidence base about current health practices in spina bifida care and health outcomes;this evidence is needed aid development of national standards of care for PWSB that can be applied to reduce disparities and improve health outcomes across clinics, populations and regions of the US. The objective of this application is to test the feasibility of utilizing a standardized registry tool to collect data from patients with spina bifida and to implement the tool to collect patient data. A complete source for spina bifida patient data will make it possible to compare treatment care and outcomes of populations and identify areas for future research to guide best clinical practices and improve the lives of PWSB. The feasibility of utilizing a standardized registry tool for collecting data on patients with spina bifida will be addressed by collecting data from 125 patients in our clinic every year for 3 years, using the data collection tool provided for this project. We will also assess how easy it is to use these forms in a clinical setting, and to integrate use into existing data collection systems. The goal of this project is to improve the health and quality of life of people with spina bifida. It addresses the """"""""Healthy People 2010"""""""" priority area of disability and secondary conditions and is aligned with NCBDDD's performance goal to improve the health and development of all people with disabilities or potentially disabling conditions. It implements steps to establish the foundation for a National Spina Bifida Patient Registry, which will ultimately be applied to improve care and health of people with spina bifida.
The goal of this project is to improve the health and quality of life of people with spina bifida. It addresses the Healthy People 2010 priority area of disability and secondary conditions and is aligned with NCBDDD's performance goal to improve the health and development of all people with disabilities or potentially disabling conditions. It implements steps to establish the foundation for a National Spina Bifida Patient Registry, which will ultimately be applied to improve care and health of people with spina bifida.
