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Improving Data, Improving Care, Making it Count


Background: The number of people affected by complex childhood rare conditions (CCRC), such as spina bifida (SB), is estimated to be 1/1500 globally. While the prevalence of these conditions is low, they have high impact in terms of health care costs and impact on the family and the community. Reliable and valid clinical data are scarce and insufficient to identify and evaluate clinical practices that lead to the best outcomes in care for these populations. Diagnosis-specific Electronic Medical Records (EMRs) offer an important opportunity for specific clinical populations and their providers. Currently, most spina bifida clinics are required to enter data in both their institution’s EMR, as well as in the spina bifida electronic medical record (SB-EMR). A software application that will eliminate double data entry and allow each institution to maintain its electronic medical record while also populating a diagnosis-specific record will allow the extraction of data that can be used to measure and evaluate quality of care. This in turn has the potential to significantly impact the health and cost of care of people with spina bifida and other rare disorders. Project Goal: CDC is seeking software that will build on the existing spina bifida electronic medical record (SB-EMR) being used by 19 clinics in the National Spina Bifida Patient Registry (NBSPR). Funding will support the development of intraoperative software to extract relevant data from an institution’s legacy medical record system and input it into the SB-EMR, significantly reducing the resources needed to collect the condition-specific information critical for research. Data can then be used to evaluate the effectiveness of various treatment and prevention approaches for SB patients. Any software product developed as a part of this proposal must follow the Enterprise Performance Life Cycle process for project management, producing each of the required artifacts for a gate review prior to moving to the next stage in the process. Also, it must obtain Authority to Operate (ATO) from the Office of the Chief Information Security Officer (CISO), CDC. Impact: The proposed software tool has applications for other health condition and clinical practices. For example, other registries (e.g., ALS) could use this tool for recording and tracking patient information. In addition, state and local health departments could use a similar tool to avoid double data entry into multiple surveillance systems. Labor and associated resources at the clinic level could be reduced dramatically while improving the quality of data needed to identify health care trends and best practices for care. This project will build on the current expansion of technology and use of EMR as they are rapidly being implemented in health systems across the country. If successful, the technology and tools developed will result in a more efficient and effective data entry operation by which clinical care and prevention can be improved.
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