National Center for Research Resources NATIONAL INSTITUTES OF HEALTH T r a n s l a t I n g r e s e a r c h f r o m b a s i c d i s c o v e r y t o i m p r o v e d p a t I e n t c a r e

Connecting the Nation's Researchers, Patients and Communities: Next Steps

Internet2 Spring Meeting April 29, 2009

Barbara Alving, M.D., M.A.C.P. Director

National Center for Research Resources

NCRR

Community

National Center for Research Resources

Improved patient

care

Pre-clinical

animal model resources

imaging & informatics advances

clinical research support

research capacity

& training

community engagement

science

education

NCRR

NCRR Programs

  Research Facilities Improvement   Institutional Development Award (IDeA)   Research Centers in Minority Institutions (RCMI)   Clinical and Translational Science Awards (CTSA)   Science Education Partnership Awards (SEPA)   Animal and Biologic Material Resources (ABMR)   National Primate Research Centers (NPRC)   Biomedical Technology Research Centers (BTRC)   Instrumentation Grants

–  Shared Instrumentation Grants –  High-End Instrumentation Grants

NCRR

Trial Design

Advanced Degree-Granting

Programs

Participant & Community Engagement

Regulatory Support

Biostatistics

Clinical Resources

Biomedical Informatics

Clinical Research

Ethics

NIH & other government

agencies

Healthcare & community

organizations

Clinical and Translational Science Awards (CTSA)

Each CTSA institution is a home for clinical and translational science

NCRR

Impetus for the CTSA Program

www.CTSAWeb.org

NCRR

Goals for the CTSA Program

  Improve the conduct of clinical and translational research across the country

  Reduce the time it takes for laboratory discoveries to become treatments for patients

  Engage communities in clinical research efforts   Train a new generation of clinical and translational

researchers

NCRR

CTSA – Providing Local Leveraging Opportunities

Yerkes National Primate Research Center

Kaiser Permanente Georgia

Atlanta VA Medical Center

Complex Carbohydrate Research Center

at U Georgia Georgia Bio Georgia

Research Alliance

Emory University

Morehouse School of Medicine

CDC

Georgia Tech

Children’s Healthcare of Atlanta

Atlanta Clinical and Translational Science Institute (Atlanta-CTSI) at Emory University

NCRR

CTSA – Creating Regional Partnership Opportunities

= CTSA Institutions = East Coast Consortium = Midwest Consortium = West Coast Consortium

Weill Cornell Medical College

Columbia University

Rockefeller University

Albert Einstein College of Medicine

University of Rochester

Yale University

University of Wisconsin

Mayo Clinic College of Medicine

University of Washington

Oregon Health & Science University

University of California, Davis

University of California,

San Francisco

Stanford University

The Scripps Research Institute

Washington University in St. Louis

University of Iowa

University of Chicago

NCRR

CTSA: Building a National Consortium

Members Participating Institutions

Newest Member

WA

OR

CA

NV

AZ NM

MT

UT

WY

CO

SD

ND

NE

KS

OK

TX AK

AR

MO

IA

MN

WI

IL IN

MI

OH

KY

TN

MS AL GA

FL

LA

NC

SC

VA WV

PA

NY

VT NH

ME

MA

DE MD

RI

ID

HI

NJ

PR

CT

Currently 39 CTSAs Sites Across the Country

NCRR

CTSA National Strategic Plan Priorities

Goal One:   Enhancing National Clinical and Translational Research

Capability –  Clinical research management –  Research infrastructure –  Phenotyping – human and preclinical models

Goal Two:   Enhancing Training and Career Development of Clinical and

Translational Investigators

NCRR

CTSA National Strategic Plan Priorities

Goal Three:   Enhancing Consortium-Wide Collaborations

–  Research networking

–  Resource directory - inventory of resources

–  Data sharing

Goal Four:   Enhancing the Health of Our Communities and the Nation

–  Community engagement

–  Public health policy

NCRR

Informatics Pilots – Contracts to Improve Informatics that Support Small to Medium-Sized Clinical Studies

WA

OR

CA

NV

AZ NM

MT

UT

WY

CO

SD

ND

NE

KS

OK

TX AK

AR

MO

IA

MN WI

IL IN

MI

OH

KY

TN

MS AL GA

FL

LA

NC

SC

VA WV

PA

NY

VT NH

ME

MA

DE MD

RI

ID

HI

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NJ

PR

University of California, Davis

University of California, San

Francisco

Mayo Clinic College of Medicine

University of Washington

Vanderbilt University

Case Western Reserve University

Mansfield Clinic University of Wisconsin– Madison

Oregon Health & Science University

University of Michigan Harvard

University

NCRR

Informatics Pilot Projects

PhysioMIMI at Case Western Reserve University   Includes investigators from Marshfield Clinic, University of Wisconsin and

University of Michigan   Collects, manages, and analyzes diverse data types across institutions   Allows secure, safe and regulated transfer of information from clinical

care systems and research databases

Sharing Clinical Data at University of Washington   Includes investigators from University of California, San Francisco,

University of California, Davis and Harvard   Allow researchers to access large shared clinical repository datasets   Assist with designing research studies and generating hypotheses

NCRR

CTSA Translational Projects The Scripps Research Institute

  The CTSA program served as the catalyst that connected Scripps to Qualcomm and other technology firms

  Scripps sought to create an institute that would draw on the countless wireless technology resources in the San Diego region and to pioneer wireless health care applications

  Scripps seen as an invaluable resource for this emerging, high-impact field of research within the CTSA consortium

Pioneers Wireless Health Care Research Scripps Translational Science Institute has partnered with wireless telecommunications company Qualcomm to launch the world’s first physician-scholar training program on wireless health care research

Bringing research tools to the point of care

NCRR

Social Networking: A Tool for Biomedical Researchers

Social Networking – Definition

  Social structure made of individuals or organizations that are tied by one or more specific types of interdependency, such as values, visions, ideas, friendship, research interests or trade

Social Networking – Benefits   Establishes meaningful connections between and among

individuals   Previously accomplished by business card exchange and

conversations   Emergence of internet supported by affordable personal computers

has expanded social networking into ubiquitous online communities

NCRR

Research Networking at Harvard CTSA Catalyst

The Harvard Catalyst is a shared enterprise of Harvard University, its ten schools and its18 Academic Healthcare Centers, as well as numerous public, private and community partners

NCRR

Research Networking at Vanderbilt CTSA StarBRITE

Provides one stop shopping for research needs:   Identifies resources   Helps find experts   Obtains regulatory support   Accesses templates for research

preparation and study conduct   Obtains database development

software   Provides institutional application

and research approval process support

StarBRITE: The Biomedical Research Integration, Translation and Education portal

NCRR

University of California, Davis CTSA Providing Access to Care to Underserved Communities

  Provides health services using UC Davis’ telehealth technologies   Collaborates with the state of Oaxaca to improve the health immigrant

populations living in California

–  100,000 to 120,000 Mixtecos have re-settled in the state

–  Indigenous Mixteco immigrants are among the most underserved populations

–  Hard to reach because of linguistic and cultural differences   Offers a high-tech way to better reach the health of underserved

immigrants

Collaboration between CTSA Community Engagement program, Center for Reducing Health Disparities and Secretariat of Health of Oaxaca, Mexico

NCRR

Research Centers in Minority Institutions (RCMIs) 18 Centers in 10 states, the District of Columbia, and Puerto Rico

Morgan State University, MD

Universidad Central del Caribe, PR

Ponce School of Medicine, PR

= RCMIs

= RCMI/RCMI Clinical Research Centers

Charles R. Drew University, CA

University of Texas at El Paso

University of Hawaii at Manoa

Texas Southern University

University of Texas at San Antonio

Jackson State University, MS

City College CUNY

Hunter College CUNY

Howard University, DC

Tuskegee University, AL

Clark Atlanta University, GA

Florida A&M University

Morehouse School of Medicine, GA

University of Puerto Rico, Medical Sciences Campus

Meharry Medical College, TN

NCRR

RCMI at University of Puerto Rico Telepresence in Endoscopy

RCMI Center for Information Architecture in Research Transmits Live Multicast Video of Endoscopic Procedures Simultaneously to Four Institutions via Internet2.

Transmission site: •  Experimental Surgery Lab, UPR School of Medicine Receiving sites: •  National Library of Medicine, NIH •  Rochester Institute of Technology •  Johns Hopkins Hospital •  University of Michigan School of Medicine

http://rcmi.rcm.upr.edu/rcminews/news0809/endo08

Technologies: H.323 and Conference XP

NCRR

  Collaboration between groups with different expertise and resources (technical, scientific, social and political)

  Shared infrastructure to support collaboration (designed to be extensible to other biomedical communities)

  Open access and dissemination of data and tools (i.e. Open Source)

  Bringing transparent GRID Computing to Biomedical Research

Biomedical Informatics Research Network (BIRN) A shared biomedical IT infrastructure

NCRR

Institutional Development Award (IDeA) Increasing research capacity in 23 underserved states and Puerto Rico

= Lariat Project: encircling institutions with connectivity = IDeA-eligible states

WA

OR

CA

NV

AZ NM

MT

UT

WY

CO

SD

ND

NE

KS

OK

TX AK

AR

MO

IA

MN WI

IL IN

MI

OH

KY

TN

MS AL GA

FL

LA

NC

SC

VA WV

PA

NY

VT NH

ME

MA

DE MD

RI ID

HI

CT NJ

PR

University of Idaho

Montana State University

University of Nevada, Reno

University of Wyoming

University of Alaska

University of Hawaii

Lariat Project:   High Speed internet

connectivity   Bridging digital

divide

NCRR

Institutional Development Awards (IDeA) Northeast Cyberinfrastructure Consortium Improving Research Connectivity in the Northeast

  Enhances the connectivity of networks at research institutions in underserved states can participate in data-intensive science applications

  Enhance participation in NCRR programs at IDeA institutions located in these five states

  Facilitates multi-institution research collaborations across the northeast

Collaborative research effort in five IDeA states to provide access to nationwide research networks and resources

These network upgrades will allow real time data transfer among researchers in the region.

NCRR

NIH Federated Identity Service

Principles •  Use open industry standards •  Leverage existing technologies and infrastructure •  Support and promote interoperability

NIH uses InCommon Federation as an Identity Credential Provider

•  www.incommonfederation.org/participants list of current InCommon Federation participants

•  https://nihlogin.nih.gov/NIHFederation/ list of institutions federated with the NIH.

Allows collaboration with authorized colleagues from outside NIH to utilize the username and password from their home institution to securely access multiple NIH systems

NCRR

American Recovery and Reinvestment Act (ARRA) Budget Components

Financial & Employment Reporting

Extramural Scientific Research

(All ICs, OD)

Extramural Construction

(NCRR)

Intramural Repair &

Improvement & Constr.

(B&F)

SIG & Other Cap

Equip (NCRR)

$8.2 B $1.0 B $0.5 B $0.3 B

ARRA appropriated $10 Billion (B) directly to NIH Other HHS (AHRQ) to also transfer

$0.4 B

Comparative Effectiveness

Research (OD)

NCRR

NCRR ARRA Homepage

http://www.ncrr.nih.gov/recovery

NCRR

NCRR Funding through ARRA

  $1.0 Billion for construction, repair and renovation –  RFA for Extramural Research Facilities Improvement

Program (C06)

–  RFA for Core Facility Renovation, Repair and Improvement (G20)

  $300 Million for shared instrumentation and other capital research equipment –  RFA for Shared Instrumentation Grant (SIG)

–  RFA for High End Instrumentation (HEI)

  $310 Million for scientific research –  Supplements to existing resource programs (IDeA, RCMI,

CTSA BTRC and ABMR)

NCRR

ARRA Limited Competition RFA: Enabling National Networking of Scientists and Resource Discovery

RFA-RR-09-009

Purpose:   To develop, enhance, or extend infrastructure to facilitate national

discovery of individuals and resources to support biomedical research   Includes a diversity of institutions (in size, technology sophistication,

geography, racial/ethnic culture) ensuring broad use and impact   Distributed (non-centralized) approach

Mechanism of Support:   Resource-Related Research Projects Cooperative Agreement (U24)

Funds Available   $30 million over two years

NCRR

ARRA – NCRR Administrative Supplement Collaborative Community Engagement Research

Examples:   Develop, expand, and/or evaluate telehealth networks

linking academic health centers and health care providers in rural and other medically underserved areas   Leverage HRSA, VA, FCC, and/or USDA telehealth

programs   Increase community capacity for clinical and

translational research, risk assessment, biosurveillance, emergency preparedness and disaster recovery

www.ncrr.nih.gov/recovery/supplements/details

NCRR

NCRR/CTSA Workshop: The Role of Community Engagement in Clinical and Translational Research

May 14-15, 2009 Natcher Conference Center Building 45, Main Auditorium NIH Campus

To view the event log on to http://videocast.nih.gov

NCRR

NCRR/NIH Telehealth Conference June 25-26, 2009

http://events.internet2.edu/2009/NIH/index.html

Help determine how NCRR/NIH can partner with other agencies to accelerate research and improve healthcare