Spaulding-Harvard Traumatic Brain Injury Model System

Spaulding Rehabilitation Hospital
Harvard Medical School
300 First Avenue
Charlestown MA 02129

Project Officer: Cate Miller, Ph.D.
Project Number: 90DPTB0027

The goal of the Spaulding-Harvard Traumatic Brain Injury Model System (SH-TBIMS) is to establish a more person-centered approach to conceptualizing and evaluating long-term outcomes in individuals with severe disability after traumatic brain injury (sTBI). This project aims to give voice to persons with lived experience in how TBI outcomes are conceptualized and measured by engaging a diverse panel of traumatic brain injury (TBI) stakeholders, including individuals with TBI and their caregivers. Project objectives include: (1) promoting a shared understanding of the notion of “acceptable” outcome between consumers and professionals, (2) developing a brief telephone-based caregiver interview to detect changes in function that occur across the lifespan in individuals with sTBI, (3) establishing a standardized measure of “clinically-meaningful” change over time, and (4) promoting public awareness of existing obstacles to accessing care after sTBI and strategies to overcome them. Project outcomes include: (1) improved understanding of provider and consumer perspectives of “acceptable” outcome after sTBI, (2) expanded capacity to conduct long-term outcome assessment among individuals with sTBI, (3) increased understanding of the resources required to address the needs of TBI caregivers, and (4) greater awareness of existing roadblocks to accessing health services experienced by individuals with sTBI. Project outputs include a Conversation Guidebook About Outcome After Severe TBI to promote shared decision-making regarding goals of care between providers and caregivers of individuals with sTBI; brief telephone-administered caregiver questionnaires that provide greater knowledge on the chronic phase of recovery after sTBI, as well as improved understanding of the factors that impact caregiver effectiveness; and (3) user-friendly multimedia consumer and professional educational materials developed in partnership with TBI stakeholders.
             
  TitleEmailPhone  
Joseph T. Giacino, Ph.D.
Project Director/Principal Investigator, Module Projectjgiacino@partners.org(617) 952-5232
Ross Zafonte, D.O.
Project Co-Director/Medical Directorrzafonte@partners.org(617) 952-5227
Therese O'Neil-Pirozzi Sc.D., CCC-SLP
Database Managert.oneil-pirozzi@neu.edu(617) 573-2456
Yelena Guller, Ph.D.
Principal Investigator, Module Projectyguller@partners.org(617) 573-2698
Natalie Gilmore, Ph.D.
Co-Investigatorngilmore1@mgh.harvard.edu(717) 919-3344
Elizabeth Danaher, PT, DPT
Physical Therapistejdanaher@partners.org(978) 501-2536
Ally Sterling, ScM, MBE
Research Coordinatorallysterling@alumni.harvard.edu(617) 952-6305
Katie Golden
Research Assistantkgolden4@mghihp.edu(617) 952-6963
Jenny Zhang
Clinical Research Coordinator IIJZHANG71@mgh.harvard.edu(603) 277-0398
Mary Slavin, Ph.D.
Director of Disseminationmslavin1@partners.org 
Lynne Brady Wagner, MA, CCC-SLP, MRMC, HEC-C
Director of Diversity, Equity, and Inclusionlbradywagner@partners.org(617) 952-5442
Mario Feranil
Senior Clinical Research Coordinatormferanil@mgb.org(617) 952-6306
Shirley Shih, MD
Director of Clinical Careslshih@mgh.harvard.edu(617) 952-5249
Lewis Kazis, ScD
Co-Principal Investigator, Module Projectlkazis@partners.org 
Lydia Borsi, BS, BA
Research Coordinatorlborsi@partners.org(617)952-6306
MaryLourdes Andreu
Student InternMLANDREU@PARTNERS.ORG(786) 973-1182
Lindsay Wilson, PhD
Consultantl.wilson@stir.ac.uk 
Enrico Quilico, PhD
Consultantenrico.quilico@mail.utoronto.ca 
Samantha Kanny
Research Coordinatorskanny@mgb.org(617) 952-6376
Lauren Kemmer
Research Assistantlkemmer@mghihp.edu(617) 952-6305
Emily Lolli
Research Assistantelolli@mghihp.edu(617) 952-6305
William Torp
Clinical Research Coordinator IIwtorp@mgb.org(617) 952-6282