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Research Centers in Minority Institutions (RCMI) Translational Research Network (RTRN) Supporting Connectivity for Biomedical Research: April 24, 2006 Keith C. Norris, M.D., FACP What is the RCMI “Translational” Research Network (RTRN) ? A cooperative research network that will facilitate translational research in health disparity areas. A consortium of investigators from RCMI and partnering institutions (academic & community) Core: Data and Technology Coordinating Center (DTCC) Clinical Research to Clinical Practice – Lost in Translation? Enormous amounts of new knowledge are barreling down the information highway, but they are not arriving at the doorsteps of our patients. This is particularly true for a disproportionately high percentage of women, racial and ethnic minorities, and other high-risk groups in the US healthcare system. Lenfant C. Clinical Research to Clinical Practice - Lost in Translation? N Engl J Med 2003;349:868-74. Clinical Research to Clinical Practice – Lost in Translation? This issue of who will really benefit from research results is especially critical as we look toward applications of proteomic/genomic research. And we must direct our attention, our commitment, our energies, our creativity, and our resourcefulness to making sure that the beneficiaries will be the patients — all the patients! Lenfant C. Clinical Research to Clinical Practice - Lost in Translation? N Engl J Med 2003;349:868-74. Why “Translational” Research and a “Translational” Research Network? Interdisciplinary Research Bench Phase 1 Public-Private Partnerships Bedside Building Blocks and Pathways Molecular Libraries Bioinformatics and Computational Biology Structural Biology Nanomedicine Phase 2 Community & Public Health Practice Clinical Research/Trials & Training “Practical” Trials Biobehavioral/Cultural Community Partnered Participatory Research System Level Clinical Outcomes Assessment Geographic Systems Modeling Health Advocacy & Policy Garfield SA, et al and the Diabetes Mellitus Interagency Coordinating Committee Translation Conference Working Group. Diabetes Care. 2003; 26:2670-2674. & Sung NS et al. Central challenges facing the national clinical research enterprise. JAMA. 2003; 289:1278–1287. Norris KC. Translational Research: Moving Scientific Advances into the Real-World Setting. Ethn Dis. 2005;15(3):363-4 Why Health Disparities? Provides the greatest opportunity for understanding factors that influence clinical outcomes in real life settings (gender, ethnicity, class/SES, age, environment, etc.) Translate those findings into strategies to improve clinical outcomes for all persons & opportunity to reduce health care system costs Who can Participate in RTRN? The RCMI Community & partners IDEA institutions, GCRC/CTSA, others Project Activity/Cyber Workspaces Preferably (not necessarily) two levels of activity: across and within disciplines Other Considerations Disease, Stage (e.g. cell, animal, individual, community), Discipline e.g. nanotechnology, clinical trials, community research, computational modeling, economic modeling, etc. Similar activities/levels may involve critical resource sharing Institutional culture - promotion/credit, innovation -IP Educational Activities Faculty, trainees, community What is the Data & Technology Coordinating Center (DTCC)? The DTCC is a cohesive and integrated entity that consists of Human expertise and Technology infrastructure that will support RTRN to perform state-ofart clinical and translational research Cyber-Workspaces Active inter-and intra-institutional collaborations across disciplines with Structure & Functional Processes Research Clusters & Workgroups Interdisciplinary, organized by disease/methods/other with a shared theme Admin/Technical Provide support structure & ensure the process is active, not passive. RTRN Research Cluster Collaboratives HIV/AIDS, Infectious Diseases Diabetes/ Metabolic Diseases Neuroscience/ Mental Health Improve Health Outcomes Cardiovascular & Related Diseases Cancer & Immunology RTRN Research Methods Cluster Collaboratives Biostatistics & Epidemiology Bioinformatics and Computational Biology Structural Biology, Building Blocks and Pathways Improve Health Outcomes Clinical Trials (Western Allopathic & Traditional/ Indigenous) Community Focused Research Jackson State University DTCC JSU DTCC Facility •Internet DS3 with multiple DS1 backup connections •Dual, redundant natural gas generators provide unlimited backup power within 10 seconds of an outage of primary power. •Totally redundant, high speed switched network •Eliminates traffic bottlenecks •Redundant, fault tolerant, load-balanced server farm protects against single points of failure •State-of-the-art, fiber-attached Storage Area Network •Inergen gas system extinguishes fires within 10 seconds of detection (Inergen: clean gaseous agent that will not damage equipment - or humans!). •High capacity, fiber-attached, robotic tape libraries provide rapid, reliable backup for several terabytes of on-line storage. •Automated data center and network management tools ensure continuous operations RTRN - A Complex System Complex System: A system composed of multiple vertical organizational levels engaged in horizontal processes that cross vertical organizational boundaries Problems occur at the interchange boundaries/interfaces, including Duplication/redundancy of effort Inefficiency/variability of process Interchange vs Interoperability Interoperability Ability of >2 systems or components to exchange information and to predictably use the information that has been exchanged. Source: IEEE Standard Computer Dictionary: A Compilation of IEEE Standard Computer Glossaries, IEEE, 1990] Syntactic interoperability (interchange) Blue socks/Red Bull Time flies/Fruit flies I Love the Red Sox I wear red socks I need the Red Cross I have a red cross The lion King The lyin’ King Semantic interoperability Meaning & Context Health Level Seven (HL7) Develops specifications that enable the semantically interoperable interchange of healthcare and research data between information systems across the entire healthcare continuum. Remote Electronic Data Capture RCMI Clinical Site Nurse JSU-DTCC Data Collection (through RDC) Review Data Manager Data Monitor Review/Verify WWW Discrepancies Oracle Clinical Review/Verify Approve Investigator Monitor CyberWorkspaces RCMI Translational Research Network Education and Training Educational seminars Lectures Video conferences Distance learning Web casting. Research Clinical trials Community-participatory Basic research studies Interdisciplinary studies Improve health outcomes for historically disadvantaged populations. Data Mgt Data sharing across health disparity areas, data types, and platforms Communication and data management through DTCC Ethics Ensure studies provide individual benefit without burdens or risks for participants. When you have exhausted all possibilities, Remember this...you haven't. - Author Unknown