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.
In addition to contributing data to the TBIMS National Database, each TBI Model System center is required to conduct a site specific research project. In the 2017-2022 funding cycle, our site specific research project is:
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.
A requirement of all TBI Model System centers is participation in multi-center ‘module studies’ with other TBIMS centers. In the 2017-2022 funding cycle, the SH-TBIMS is leading one module study and participating in two additional module studies.
LEAD CENTER
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 concert with the Indiana TBIMS, TIRR TBIMS, Tampa VA Polytrauma Rehabilitation Center (PRC), and Richmond 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.
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
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
