Spina Bifida Registry Project

Oregon Health & Science University, Portland OR

Investigators

Linked publications, trials & patents

Abstract

DESCRIPTION (provided by applicant): SB is the most common permanently disabling birth defect in the US and requires complex and long-term medical care. Enhanced understanding of care practices of SB programs and about health outcomes will improve outcomes and quality of life experiences for persons living with SB. 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 SB 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 SB. 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 SB, 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 SB care and health outcomes;this evidence is needed to aid development of national standards of care for people with SB 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 SB Registry Longitudinal Data Collection and Evaluation project via utilization of the standardized registry tool to collect data from patients with SB. A complete source for SB 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 SB. 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 SB 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.