I RISE: Improving resilience in survivors' experience
A renowned expert on traumatic brain injury, Ross Zafonte, D.O., is the senior vice president of research, education, and medical affairs at Spaulding Rehabilitation Hospital and chair of the Department of Physical Medicine and Rehabilitation at Harvard Medical School.
Dr. Zafonte talks about partnering with SameYou for Brain Injury Recovery to launch a new research initiative under the auspices of the Spaulding Research Institute’s Discovery Center for Brain Injury and Concussion Recovery.
How is Spaulding partnering with actor & activist Emilia Clarke’s foundation SameYou?
Emilia Clarke very insightfully recognised that access to excellent neurorehabilitation was critical to her healing as a brain haemorrhage survivor so she established SameYou to improve the quality of care patients receive following neurological trauma. The foundation approached us as a potential partner knowing our reputation as one of the leading rehabilitation centers in the United States and the depth and breadth of our work in brain injury.
Thanks to SameYou’s vision and incredible generosity, we are embarking on a groundbreaking research study, the I RISE Research Project, to better understand the brain’s “resilience” both before and after an acquired brain injury—such as those caused by stroke, head trauma, and illness.
What is brain resilience and why is it important to study?
Resilience is the ability to thrive in an adverse environment or bounce back after a traumatic event. When it comes to the brain, we have found that peoples’ resilience can vary dramatically even though their conditions or injuries may be very similar.
Some patients with more serious injuries progress surprisingly well, and others with seemingly less complex conditions may struggle. Each person has their own unique path of recovery, based on a host of diverse factors. Early-life experience and exposures, biology and genetics, injury severity, post-injury treatment, and even personal coping mechanisms like faith, beliefs, or outlook, all appear to play an important role.
The goal of I RISE is to unravel how these biological, psychological, and social—or “bio-psycho-social”—factors interact to influence patients’ course of recovery and their response to interventions. We expect that we will find that certain people have specific biological networks, genetic components, and chemical factors that make them more vulnerable and less resilient, or vice versa, but we’ll never know for sure until we do the research. Ultimately, we want to leverage our data to design treatment strategies that promote resilience and help patients have the best possible outcomes.
What’s the plan for this research project?
We are going to begin examining this concept of resilience in the brain injury population here at Spaulding. While we will examine people ranging in age from 18 to 55, we particularly aim to learn more about young adults like Emilia Clarke because the impact these injuries have on quality of life for this group in the long term can be so remarkably devastating. Right now, we are in the early stages of this project.
Because resilience involves so many different variables with complicated interactions, we need to be meticulous and thoughtful in the initial design of our study. Otherwise, how can we ever be sure that the insights and relationships we uncover are true and clinically meaningful? Good science takes time.
Planning a research project of this magnitude—which will involve components like advanced brain imaging, complex laboratory analysis, and cognitive surveys in human subjects—requires a very strict set of protocols to ensure everyone’s safety and the accuracy of our results. These processes have also been complicated by the COVID-19 pandemic, which resulted in a state government–mandated halt on the study of human subjects and required us to pivot or delay certain elements of the project to protect our patients’ welfare. We have already put an enormous amount of work into this design phase, and once our strategy gets all the proper institutional and government approvals, we will be able to start recruiting patients to take part.
Why is Spaulding the right place to do this research?
Spaulding’s excellence in rehabilitation care is widely known, but over the past decade or so, we have also built an extensive infrastructure in research that is really quite unique, covering everything from imaging, to laboratory work, to following people over the long term. We are also engaged with a range of patient populations including the military, professional and college sports, those with the most severe injuries, and more. This special environment provides us with an opportunity to not only make discoveries here at Spaulding but to also build valuable collaborations to leverage our findings across the United States and internationally. We recognise that no single place will have all the answers so it will take reaching out across disciplines, institutions, and borders to make our work the most robust and meaningful, and Spaulding’s inquisitive and committed culture lends itself naturally to that approach.
What has SameYou’s support of this work meant to you?
This study is particularly exciting because, although the brain injury rehabilitation field is a bit more nascent than other clinical areas, this type of holistic “bio-psycho-social” research has already resulted in stunning progress in areas like cardiology, cancer, and diabetes. The generous funding from SameYou is allowing us to begin to explore this promising area to build early results that we can then leverage to apply for other types of support to expand the scale of our efforts, be it from the National Institutes of Health, the NIDILRR [National Institute on Disability, Independent Living, and Rehabilitation Research], the Department of Defense, or other international funders.
SameYou is helping us lay the scientific groundwork in this specific patient population, which hasn’t really been done before, and we are so grateful to have the opportunity to partner with them on this invaluable research.