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 Phase 2 Community & Public Health Practice Building Blocks and Pathways Molecular Libraries Bioinformatics and Computational Biology Structural Biology Nanomedicine 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  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  Other Considerations  Institutional culture - promotion/credit, innovation -IP  Educational Activities  Faculty, trainees, community

What is the Data & Technology Coordinating Center (DTCC)?

 The DTCC is a

cohesive integrated entity

and that consists of

Human expertise

and

Technology infrastructure

that will support RTRN to perform state-of art 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 support  Provide structure & ensure the process is active, not passive.

Diabetes/ Metabolic Diseases

RTRN Research Cluster Collaboratives

HIV/AIDS, Infectious Diseases Cardiovascular & Related Diseases Improve Health Outcomes Neuroscience/ Mental Health Cancer & Immunology

RTRN Research Methods Cluster Collaboratives

Biostatistics & Epidemiology Bioinformatics and Computational Biology Improve Health Outcomes Clinical Trials (Western Allopathic & Traditional/ Indigenous) Structural Biology, Building Blocks and Pathways 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 Data Collection (through RDC)

JSU-DTCC

Review Data Manager Monitor Review/Verify Investigator Approve

WWW

Data Discrepancies

Oracle Clinical

Review/Verify Monitor

Cyber Workspaces

RCMI Translational Research Network

Education and Training Educational seminars Lectures Video conferences Distance learning Web casting.

Data Mgt Data sharing across health disparity areas, data types, and platforms Communication and data management through DTCC Improve health outcomes for historically disadvantaged populations.

Research Clinical trials Community-participatory Basic research studies Interdisciplinary studies Ethics Ensure studies provide individual benefit without burdens or risks for participants .

When you have exhausted all possibilities, Remember this...you haven't.

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