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The mission of the Core in Biomedical Informatics is to provide informatics services for the Center for Population Health and Health Disparities to (1) support collection and integration of the effects of biological, behavioral, social environmental, and physical environmental factors on prostate cancer outcomes, (2) support analysis of the relationship of these factors with disparities in prostate cancer outcomes, and (3) provide secure and appropriate access to the integrated information to at-risk populations and the public health community at large. The projects in the CPHHD span a broad range of disciplines, and each involves data collection using a variety of methods for data collection ranging from laboratory instruments to questionnaires. This Core interacts with each project to establish the protocols necessary to guarantee data quality, security, the appropriate schedule for transfer to the Core data repository and a plan for scheduled data backups. These protocols include consistency with HIPAA requirements, the necessary patient de-identification and curation of the patient consent forms for consideration in potential research access. This Core has the responsibility of assessing parameters that are captured within each project to determine if they may be similarly named but used differently in a specific project, as well as whether they may be equivalent despite being named differently across projects. This is a necessary step to enable the integration of data across the projects in the CPHHD. This process will be interactive with Project PI review to ascertain that data values and interpretations are appropriately included and that selection of values for each parameter is consistent where possible. The data from each CPHHD project are maintained in a separate flat file to enable ease of access by project-related researchers, but will be integrated with the data of the other projects through the use of a data model that maps each project's data elements into an overarching data model. The goal of this data model is to enable a researcher to rapidly identify and access data that may exhibit similar values of the equivalent parameter captured in a separate project for use in data analysis and interpretation. The goal of a common data repository is to support ongoing research access across the projects of the CPHHD and to the Dissemination Core for use in supporting policy makers and community leaders who may be granted direct access to the data. This will be maintained within the constraints of patient anonymity and patient consent, as well as meeting all HIPAA requirements. The Core will support the development and publication of summary data reports, as well as direct data access to individuals granted such rights through the Administrative Core. Key personnel
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© 2004 · CPHHD center · cphhd@cceb.upenn.edu |
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