Two years ago this February, a message went out announcing the launch of the Rehabilitation Outcomes Center at Spaulding (ROCS). The center was founded on the work of researchers, clinicians, advocates, and impassioned community members; catalyzed by the science of rehabilitation and stories of facing adversity. In these two years, we have made good strides.

We have grown our community through this newsletter, social events, the Finding Strength podcast, and a biweekly ROCS Open Scientific Meeting, a platform for people to share and collaborate on their efforts towards better outcomes for those we serve. It is that pursuit of better that draws us together.

Thanks to our expanding network, we have helped to amplify voices around issues like wheelchair repair protections and the NIH designation of people with disabilities as a population with health disparities. Yet with barriers to access, disproportionate research funding allocations, and inequitable outcomes for people with disabilities, much remains to be done.

The driving force behind ROCS is our dedicated troupe of research faculty. Some research highlights from the past two years have included:

• the dissemination and translation into multiple languages of a social participation assessment tool for burn survivors, the LIBRE (Life Impact Burn Recovery Evaluation) Profile. The LIBRE is the first of its kind instrument focused on the social impacts of burn injury. 
• We received funding from the MGB Springboard Studio and the Gillian Reny Stepping Strong Center to pilot an interdisciplinary, holistic, longitudinal trauma clinic in collaboration with the Center for Surgery and Public Health at Brigham and Women’s hospital. The TRAIL Clinic (Transforming Recovery After Injury for the Long-term) is set to launch this spring.
• The Coma Recovery Scale - Revised, a seminal assessment in the evaluation of Disorders of Consciousness (DoC), was adapted and validated for use as the CRS-R FAST in the intensive care unit, where families are desperately in need of objective measures of progress. 
• This year, ROCS will be administering a new funding opportunity, the Innovative Treatments in Disorders of Consciousness (ITDC) program, to generate and initiate disruptive ideas in the treatment of patients with DoC and other “slow-to-recover” brain injuries, thanks to a gift from a generous donor.
• Using big data to understand cause and effect of head injuries, we learned that chronic traumatic encephalopathy (CTE), a deadly neurodegenerative disease, is a result of collective hits to the head over time, better equipping us to protect our brains while engaging in the activities we love.
• Our three Model Systems programs in burn injury, traumatic brain injury, and spinal cord injury have continued to thrive. Each day we contribute to the national, longitudinal data centers that help us understand the lifelong nature of these events.

Our faculty perform this critical work in tandem with mentorship and training. Blossoming partnerships with the MGH Institute of Health Professions and the multi-institutional Learning Health Systems Rehabilitation Research Network (LeaRRn) have created opportunities for future generations of rehabilitation scientists to grow in our vibrant academic, patient-centered community. We established Spaulding Rehabilitation as a LeaRRn ‘Health System Partner’, hosting scholars to move the needle towards a Learning Health System: embedding discovery and data into routine clinical care, together with people with lived experience. Our work with LeaRRn has grown into a larger collaboration with a new 5-year, AHRQ and PCORI-funded center, LeaHD (Learning Health systems training to improve Disability and chronic condition care), in which Spaulding will host scientists focused on rehabilitation and long-term services and supports for persons with disability and chronic conditions.

Life-changing disability is a reality for all of us. In the years ahead, we must forge relationships, both with those who are like and unalike ourselves. We must listen to each other with empathy and empower those who live with disability. We must educate ourselves on the systems within which we operate, so that we might compel change. And we must do so with love and compassion.

In that spirit, please take a minute to watch the below video of a dance performance choreographed by one of our research staff, Ally Sterling, inspired by one of our podcast guests, Tracey Macarty. 

With gratitude,

The Rehabilitation Outcomes Center at Spaulding

Jeffrey Schneider, Co-Director

Joseph T. Giacino, Co-Director

Dan Daneshvar, Director of Training

Lewis Kazis, Director of Research

Mary Slavin, Director of Dissemination

Chloe Slocum, Director of Health Policy & Advocacy

Shonali Gaudino, Administrative Director

LIBRE Profile App for Burn Survivors

Work has begun to expand the Life Impact Burn Injury Recovery Evaluation (LIBRE) Profile- an assessment to measure and benchmark social participation in adults following burn injury- into a publicly accessible mobile application. This unique academic, clinical, and community-based collaboration provides the critical next step to translate the LIBRE Profile from a research product into a widely used app that meets the needs and preferences of burn survivors. The app will empower survivors to manage their own recovery and facilitate conversations with their clinicians on social participation outcomes as part of their clinical care. Ultimately, the LIBRE Profile App will serve as a springboard for the advancement and development of evidence-based approaches to enhance social participation among burn survivors and become an integral component of burn injury rehabilitation. This app will contribute to impactful changes in policy and practice to improve the lives of individuals with disabilities.

LEARN ABOUT LIBRE

Led by ROCS Co-Director Joseph Giacino, PhD and PhD candidate Katie Golden, OTD, the goal of this newly funded project is to utilize knowledge translation (KT) principles and procedures to promote use of evidence-based practice guidelines on management of persons with disorders of consciousness (DoC), to improve their health and function and the quality of care they receive and maximize the functional recovery. 

Due to a number of factors, misunderstanding and ethical distress can be common in clinical management of persons with acquired disorders of consciousness. Misdiagnosis is alarmingly high, prognostication imprecise, and life-sustaining treatment is commonly discontinued prematurely. Evidence-based practice guidelines for clinical management of DoC were published in 2018 to address these problems. Despite their clinical importance, systematic investigation of guideline awareness, beliefs and adoption among providers has never been undertaken.

Tedy's Team Center Names Fellows

MGH Institute of Health Professions

Four faculty members from the MGH Institute of Health Professions have been named Tedy’s Team Research Fellows and have been awarded seed funding from the Institute that they will use to collect pilot data with the goal of using it to apply for external funding to advance their research.

LEARN MORE ABOUT TEDY'S TEAM

Massachusetts Senate Passes Wheelchair Warranty Reform

An Act expanding wheelchair warranty protections for consumers with disabilities—S.2541—requires all wheelchairs to come with warranties, extends the minimum warranty period to two years, sets standards for wheelchair repairs and replacements, and eliminates the cumbersome prior authorization process for all wheelchair repairs under $1,000.

READ ABOUT THE BILL

READ ABOUT WHEELCHAIR REPAIR CHALLENGES