By Greg Ayotte, Linda Robinson and Mitchell Rosentahl, PhD
reprinted in part from the TBI Challenge! December/January 2001-2002
In the early 1970s, it became apparent that the complex nature of some injuries and the disabilities that followed required special attention by the federal government. Care provided for these injuries varied from region to region and even between care providers in the same region. Basic questions about these injuries and their treatment could not be answered because there was no mechanism for systematically investigating these issues and collecting consistent data. Without a central storehouse for that information, there was no way to tell who the injured were, how they were treated or which treatments worked. Further, once a “patient” left the hospital, professionals who provided their acute and rehabilitation care rarely saw them again. Without the ability to track people over time, we could not determine the long-term disabilities resulting from injury and which treatments resulted in the best outcomes for persons with these injuries. The Spinal Cord Injury (SCI) Database provided the foundation for the first SCI Model System, which has operated continuously since 1970.
The TBI Model Systems (TBIMS) were established in 1987 through a grant from the United States Department of Education, National Institute on Disability Rehabilitation and Research (NIDRR). Establishment of the Burn Care Model Systems followed in1994. All TBI Model Systems are housed in or linked to well-established medical centers that provide high quality trauma care from onset of injury through the post-acute phase. Each of these facilities treats large numbers of persons with traumatic brain injury, necessary for supporting research projects and data collection. There are currently sixteen TBIMS projects located throughout the United States. As of November 2005, they have provided care and collected information on 5,756 individuals with traumatic brain injury during the acute hospital stay and in the community after discharge. People who have been cared for in a TBI Model System have been followed for up to 13 years post-injury. After discharge these individuals are seen and evaluated annually, at which time information is collected on their current status, including relevant information about their living situation, family, employment, well-being and the residual effects of the brain injury. Altogether, 496 pieces of information are gathered during the initial acute period and 470 pieces of information during each yearly evaluation. When analyzed, this information describes: (1) who is incurring the brain injuries, (2) what is causing the brain injuries, (3) what treatments are being used and how much they cost and (4) what the short- and long-term outcomes are.
The TBI Model Systems have evolved from the two original goals: (1) development of an exemplary system of care and (2) uniform data collection related to important research questions. Current projects must have these integrated systems of care to serve as a basis for conducting cutting edge/innovative research on brain injury rehabilitation. The TBIMS projects conduct research on a range of rehabilitation strategies, including medical, vocational, and community interventions.
Because of the efforts of the TBI Model Systems and others, we are able to influence the development of standards of care that may assure uniform quality of care throughout the United States. The goal of data (i.e., information) collection addresses the crucial issues of who is being injured and what is helping them get better. In the TBI Model Systems, data is collected systematically, entered into a national database and then analyzed carefully to determine which treatments work best and result in the best outcomes for persons with brain injury. Further, it is believed that the TBI Model Systems database has stimulated more rigorous research, leading to better treatments and improved outcomes for people with TBI. Through the TBI Model Systems efforts, we should gain answers to some important questions such as:
- What diagnostic and treatment innovations can improve rehabilitation outcomes for persons with traumatic brain injury.
- Which methods of service delivery interventions after inpatient rehabilitation discharge are most effective?
- Which interventions improve vocational outcomes and community integration?
- Can we predict long-term outcomes at hospital discharge and at long-term follow-up? What are the key predictors?
- What is the relationship between cost of care and outcomes? If we spend more money, do we obtain better results?
While every model system is involved in collecting some of
the same information, each center also initiates studies on
different aspects of brain injury and outcomes based on the
population of people they serve. TBI Model Systems sites
actively pursue a wide variety of interesting research
questions. Changes in society and the needs of persons with
brain injury will continue to mold what we need to know and
the directions that Model Systems take in their research
agendas. For more information about the TBI Model Systems,
go to their website at http://www.tbindsc.org/. Also watch
for abstracts of Model Systems research on the Brain Injury
Association of America's website at www.biausa.org.
Traumatic Brain Injury Model Systems Grantees FY 2007-2011
The Institute for Rehabilitation and Research
Address: 1333 Moursund, Houston, TX 77030-3405
Project Director: Mark Sherer, Ph.D.
Telephone#: (713) 799-7007; (713) 383-5652
Fax#: (713) 799-7049
http://www.memorialhermann.org/locations/TIRR_BISrehab.html
Craig Hospital
Address: 3425 South Clarkson Street,
Englewood, Colorado 80113-2899
Project Director: Gale Whiteneck, Ph.D.
Telephone#: (303) 789-8204
Fax#: (303) 789-8441
http://www.craighospital.org/Research/TBIMain.asp
Kessler Medical Rehabilitation Research & Education Center
Address: 1199 Pleasant Valley Way West Orange, NJ 07052-1424
Project Director: Elie P.Elovic, M.D.
Telephone#: (973) 243-6815
Fax#: (973) 324-3536
http://www.kmrrec.org/nnjtbis/
Albert Einstein Healthcare Network, Moss Rehabilitation Research Institute
Address: 5501 Old York Road, Philadelphia, PA 19141
Project Director: Tessa Hart, Ph.D.
Telephone#: (215) 456-6544
Fax#: (215) 456-5926
http://www.einstein.edu/mossrehab/
Ohio Regional TBI Model System
Organization Name: The Ohio State University Research Foundation
Address: Dodd Hall, 480 Medical Center Drive, Columbus, OH 43210-1239
Project Director: John D. Corrigan, Ph.D.
Telephone#: (614) 293-3830
Fax#: (614) 293-4870
www.ohiovalley.org
Mayo Clinic College of Medicine
Address: 200 First Street SW, Rochester, Minnesota 55905
Project Director: Allen W. Brown, M.D.
Telephone#: (507) 255-3116
Fax#: (507) 255-1625
http://mayoresearch.mayo.edu/mayo/research/tbims/
Mount Sinai School of Medicine
Address: One Gustave L. Levy Place, Box 1075, New York, NY 10029-6574
Project Director: Wayne Gordon, Ph.D.
Telephone#: (212) 659-9372
Fax#: (212) 348-5901
www.tbicentral.org
Carolinas Rehabilitation
Address: 1100 Blythe Blvd., Charlotte, NC 28203
Project Director: Flora Hammond M.D.
Telephone#: (704) 355-9330
Fax#: (704) 355-0709
http://www.carolinasrehabilitation.org
UT Southwestern Medical Center
Address: 5323 Harry Hines Blvd., Dallas, TX 75390-9036
Project Director: Ramon Diaz-Arrastia, M.D., Ph.D.
Telephone#: (214) 648-6409
Fax#: (214) 648-3143
http://www.utsouthwestern.edu/utsw/home/research/neurology/tbi/
Santa Clara Valley Medical Center- Medical Staff Corporation
Address: 751 South Bascom Avenue, San Jose, CA 95128
Project Director: Tamara Bushnik, Ph.D.
Telephone#: (408) 793-6446
Fax#: (408) 793-6434
www.tbi-sci.org
University of Alabama at Birmingham
Address: 619 19th Street. S., Birmingham, AL 35249
Project Director: Thomas A. Novack, PhD
Telephone#: (205) 934-3454
Fax#: (205) 975-4691
www.uab.edu/tbi
Virginia Commonwealth University
Address: Department of Physical Medicine and Rehabilitation,
VCU Box 980542 Richmond, VA 23298-0542
Project Director: Jeffrey Kreutzer, Ph.D.
Telephone#: (804) 828-9055
Fax#: (804) 828-2378
http://www.tbi.pmr.vcu.edu/
JFK-Johnson Rehabilitation Institute
Address: 2048 Oak Tree Road, Edison, NJ 08820-2012
Project Director: Keith D. Cicerone, Ph.D.
Telephone#: (732) 906-2645
Fax#: (732) 906-9241
University of Washington
Address: 1959 N. Pacific Street, Box 356490, Seattle, WA 98105-4696
Project Director: Kathleen Bell, M.D.
Telephone#: (206) 685-0935
Fax#: (206) 685-3244
www.tbi.washington.edu
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