Spina bifida is the most common permanently disabling birth defect in the United States and requires complex and long-term medical care. Enhanced understanding of care practices of spina bifida programs and about health outcomes will improve outcomes and quality of life experiences for persons living with spina bifida. 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 people with spina bifida. This project will facilitate continued development and implementation of a national patient registry. OHSU has a long history of addressing systems of care for people with spina bifida, and this project builds on experience that includes systematic collection and evaluation of clinical data. This project contributes to building the clinical evidence base about current health practices in spina bifida care and health outcomes;this evidence is needed to aid development of national standards of care for people with spina bifida that can be applied to reduce disparities and improve health outcomes across clinics, populations and regions of the US. The primary objective of this application is to extend participation in the National Spina Bifida Registry Longitudinal Data Collection and Evaluation project via utilization of the standardized registry tool to collect data from patients with spina bifida. A complete source for spina bifida patient data will make it possible to compare treatments and outcomes of populations and identify areas for future research to guide best clinical practices and improve the lives of persons living with spina bifida. Continued participation in the project will emphasize three related specific aims. First, we will continue to collect and share specific registry information on at least 125 patients with spina bifida annually. Second, we will evaluate the use of registry information for specific programmatic clinical quality improvement projects. After testing the utility of registry information for informing clinical improvement projects at OHSU, we will develop a manual that details how other clinics may use registry information to inform these types of projects. Finally, to improve sustainability of collecting and sharing registry information, we will test methods of integrating the documentation of this information into routine clinical practice within OHSU's legacy electronic medical records. Further, we will explore methods of electronically extracting registry information from the electronic medical record.

Public Health Relevance

The proposed project involves continued involvement in the National Spina Bifida Registry Longitudinal Data Collection Project by continuing to collect registry information on at least 125 patients with Spina Bifida annually and sharing that information with the CDC. Additionally, we will pilot the use of registry data for clinical quality improvement projects, and will develop a guideline manual for this process for potential distribution to other registry sites. Finally, we will continue to implement strategies to integrate documentation of registry data during standard clinical practice, and will evaluate methods of electronic extraction of these data.

National Institute of Health (NIH)
Centers for Disease Control and Prevention (NCBDD)
Research Project--Cooperative Agreements (U01)
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Special Emphasis Panel (ZDD1-HMS (05))
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Oregon Health and Science University
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United States
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