Traumatic Brain Injury Model System (TBIMS)

Traumatic Brain Injury Model System (TBIMS)

The Spaulding-Harvard System, led by Dr. Joseph T. Giacino, was selected by the National Institute of Disability, Independent Living, and Rehabilitation Research (NIDILRR) to receive federal funding as a TBIMS center. The TBIMS is a multi-center program that aims to monitor and improve long term outcomes for individuals with traumatic brain injury through enrollment in a national database, multi-center “module” projects, and single center studies. Spaulding has become a national leader in TBI research and rehabilitation under the Model Systems program as a result of excellent clinical care, research contributions, and educational efforts. 

TBIMS research is responsible for almost 500 peer-reviewed publications and has facilitated the development of TBI medical care guidelines, comprehensive diagnostic procedures, rehabilitation approaches, and more. Within the 16 TBIMS centers throughout the nation, exceptional rehabilitation additionally serves to improve injury treatment and outcomes for future patients.

TBIMS National Database

Some patients who enter the Brain Injury Program at Spaulding Rehabilitation Hospital Boston and Spaulding Hospital Cambridge are eligible to anonymously contribute their data to the TBI Model System national database. The objective of this project is to build a repository of data that will aid future TBI patients, as well as their families and clinicians. Researchers from across the nation conduct studies using the information housed in this database.

The TBI Model System National Database is over 30 years old and houses information from over 16,000 individuals. Information collected for the database includes medical history from before the injury, as well as details of the patient’s hospital course. Researchers obtain information through medical records, a questionnaire, and a brief bedside test. Researchers also conduct follow-up phone interviews every few years to follow patients for life. The information collected remains confidential. This study presents a great opportunity for patients to help future patients and clinicians with minimal effort and risk to themselves.

Click here to see a list of other sites currently contributing to the TBI Model System National Database.

Principal Investigator: Joseph T. Giacino, PhD

Study Contact: Amber Thomas, BS (athomas42@partners.org)

Development, validation and feasibility of the Coma Recovery Scale- Revised for Accelerated Standardized Testing (CRSR-FAST)

In light of the high incidence of diagnostic error among patients with disorders of consciousness (DoC) (estimated to be 30-40%), and the risk of premature withdrawal of life-sustaining treatment, we are testing the validity of an abbreviated version of the Coma Recovery Scale-Revised (CRS-R) for use in the intensive care unit, the CRSR For Accelerated Standardized Testing (CRSR-FAST). The CRSR-FAST will provide clinicians with a brief, standardized assessment measure that can accurately determine level of consciousness. The CRSR-FAST will enable longitudinal assessment across the continuum of recovery, bridging the communication divide between the acute care and rehabilitation settings.

Principal Investigator: Yelena Bodien, PhD

Study Contact: Yelena Bodien, PhD (ybodien@mgh.harvard.edu)

Partnering with Caregivers to Increase Knowledge of the Post-Acute Phase of Recovery from Severe TBI: Development and validation of the “Post-Acute Survey on Severe Disability after TBI (PASSD-TBI)”

We are leading a multi-center study, in collaboration with the Indiana TBIMS, TIRR TBIMS, Tampa VA Polytrauma Rehabilitation Center (PRC), Richmond VA PRC, and San Antonio VA PRC, that will develop and test the feasibility of a telephone-based structured caregiver interview, the “Post-Acute Survey on Severe Disability after TBI (PASSD-TBI).” The PASSD-TBI will provide an efficient means of obtaining long-term outcome data on persons with prolonged disorders of consciousness, identify favorable and unfavorable influences on caregiving activities and increase knowledge of caregiver burden. If the results of the pilot study are favorable, the PASSD-TBI will be nominated for inclusion in the TBIMS National Database.

Principal Investigator: Joseph T. Giacino, PhD

Study Contact: Amber Thomas, BS (athomas42@partners.org)

Trajectories of Cognitive Functioning Years after TBI

The aim of this study is to characterize patterns of cognitive function over time among individuals who are 2-7 years post-injury. Participants will be administered the Brief Test of Adult Cognition by Telephone (BTACT) to assess one group of TBIMS participants 5, 6, and 7 years post-injury, and another group 2, 3, and 4 years post-injury. This study will allow the TBIMS, for the first time, to contribute to the advancement of knowledge regarding long-term cognitive functioning after traumatic brain injury. This project is led by the New York TBIMS program.

Principal Investigator: Kristen Dams-O’Connor, PhD (New York TBIMS)

SH-TBIMS Principal Investigator: Joseph T. Giacino, PhD

Study Contact: Michael Bergin, PhD (mjbergin@partners.org

Development and Assessment of Crosswalks in the TBIMS Database

Using data from the TBIMS National Database, this study will evaluate various procedures for creating crosswalks between the FIM tool and the Continuity Assessment Record and Evaluation (CARE) Tool Item Set, as well as evaluate the existing crosswalk between the Patient Health Questionnaire (PHQ-9) and the Traumatic Brain Injury Quality of Life (TBI-QOL) Depression Short Form and between the Generalized Anxiety Disorder 7-item (GAD-7) scale and the TBI-QOL Anxiety Short Form. This project is led by the Rocky Mountain Regional Brain Injury System.

Principal Investigator: Dave Mellick, MA (Rocky Mountain Regional Brain Injury System)

SH-TBIMS Principal Investigator: Therese O’Neil-Pirozzi, ScD, CCC-SLP

SH-TBIMS Study Contact:Therese O’Neil-Pirozzi, ScD, CCC-SLP

TBIMS Multicenter Modular Projects Include:

  • “Internet Use and Online Social Participation among Individuals with TBI”
  • “Cognitive Testing (BTACT) in the TBI Model Systems”
  • “Statins and Outcome After TBI: An Observational Study”
  • “Development of an Extended Measure of Global Function to Support Clinical Trials Originating in Acute Rehabilitation”
  • “Understanding Cause of Death in the TBI Model Systems”

For more information about the Spaulding-Harvard TBI Model System, please contact Dr. Michael Bergin at (617) 952-6310 or mjbergin@partners.org.