PABI Plan - The Sarah Jane Brain Project

CHAPTER 2: The TBI Model System and the PA/TBI Model System
The Current Status of The TBI Model System
The TBI Model Systems came into existence in 1984 when the National Institute of Disability
and Rehabilitation Research (NIDRR), United States Department of Education funded four
centers as five-year grants. The four centers were located at Medical College of Virginia, Mount
Sinai Medical Center, Rehabilitation Institute of Michigan and Santa Clara Valley Medical
Center. A data center at SUNY Buffalo was funded as well.
The initial funding for the centers was about $250,000 per year (direct and indirect costs). Every
five years the Model Systems are re-competed and some centers are re-funded, some centers are
de-funded and new centers are funded. Therefore, the “cadre” of TBI Model Systems has not
been stable over the 25 years of the program. The current cohort of the TBI Model Systems was
funded in October 2007, and consists of 16 centers, a data center that is located at Craig Hospital
in Denver, Colorado and a Knowledge Translation Center that is located at the University of
Washington. Current funding is about $420-450,000 per year (direct and indirect costs).
These 16 programs are located at: Baylor College of Medicine, Craig Hospital, Dallas
Rehabilitation Center, JFK-Johnson Rehabilitation Institute, Kessler Institute for Rehabilitation,
Medical College of Virginia, Mass Rehabilitation Hospital, the Mayo Clinic, Mount Sinai
Medical Center, Ohio State University, Rehabilitation Institute of Chicago, Rehabilitation
Institute of Michigan, Santa Clara Valley Medical Center, Shepherd Center, University of
Alabama, and University of Washington.
Although there is no standardization of the rehabilitation programs provided by the TBI Model
Systems, the programs are CARF and JCAHO accredited. Each program is supported for its
“local” research as well as its contribution to multi-site knowledge development projects and
clinical trials. Currently, there are more than 50 research projects ongoing within the TBI Model
Systems. Thus, the TBI Model Systems are research centers.
In addition, each center contributes between 35-40 new cases each year of individuals with
moderate-severe TBI who receive their acute care and rehabilitation within the model system.
These individuals are followed at intervals of 1, 2, 5, 10, 15 and 20 years post-injury. Currently,
there are about 8,000 individuals with TBI included in the TBI Model System database that are
being followed. Thus the TBI Model System represents the only longitudinal database on the
long-term outcome and challenges of individuals with TBI.
The TBI Model System includes only those individuals who are older than 16 years of age. The
age was originally set based on the JCAHO parameters and not based on any specific
neurological evidence. Most of the TBI research over the years has been targeted towards the
adult TBI population. It is worth noting children are not “little adults.”
Challenges for Developing a PA/TBI Model System
There are several challenges that are barriers to developing and implementing a PA/TBI Model
System. They include the following:
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