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?

Community & Public Health Practice

Clinical Research/Trials & Training“Practical” Trials

Biobehavioral/Cultural Community Partnered Participatory ResearchSystem Level Clinical Outcomes Assessment

Geographic Systems ModelingHealth Advocacy & Policy

Bench Bedside

Interdisciplinary Research Public-Private Partnerships

Building Blocks and PathwaysMolecular LibrariesBioinformatics and Computational BiologyStructural BiologyNanomedicine

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

Phase 1 Phase 2

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 and integrated entity that consists of

Human expertise andTechnology 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 themeAdmin/Technical support

Provide structure & ensure the process is active, not passive.

Diabetes/MetabolicDiseases

Neuroscience/Mental Health

Cancer & Immunology

Cardiovascular & Related Diseases

HIV/AIDS, Infectious Diseases

ImproveHealth

Outcomes

RTRN Research Cluster Collaboratives

Bioinformatics and

Computational Biology

Structural Biology,

Building Blocks and Pathways

Community Focused Research

Clinical Trials(Western

Allopathic & Traditional/Indigenous)

Biostatistics & Epidemiology

ImproveHealth

Outcomes

RTRN Research Methods Cluster Collaboratives

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

InteroperabilityAbility of >2 systems or components toexchange 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]

Semanticinteroperability

Syntacticinteroperability

(interchange)

Blue socks/Red BullTime flies/Fruit fliesI Love the Red SoxI wear red socksI need the Red CrossI have a red crossThe lion KingThe lyin’ King

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

Oracle

ClinicalWWW

NurseNurse

InvestigatorInvestigator

MonitorMonitor

MonitorMonitor

Data Data ManagerManager

Data Data CollectionCollection

(through RDC)(through RDC)

DiscrepanciesDiscrepancies

ApproveApprove

Review/VerifyReview/Verify

Review/VerifyReview/Verify

ReviewReview

RCMI Clinical Site JSU-DTCC

DataData

Cyber-Workspaces

RCMI Translational Research Network

Research Clinical trials

Community-participatoryBasic research studies

Interdisciplinary studies

Ethics

Ensure studies provide individual benefit without

burdens or risks for participants.

Education and TrainingEducational seminars

LecturesVideo conferencesDistance learning

Web casting.

Improve health outcomes for historically

disadvantaged populations.

Data MgtData sharing across health disparity areas, data types,

and platformsCommunication and data

management through DTCC

When you have exhausted

all possibilities,

Remember this...you haven't.

- Author Unknown