Since 2011, we have funded almost $1,000,000 in research. Our initial focus was to better understand the functional implications of hemispherectomy as well as interventions to improve those outcomes. We have now broadened our research focus to address other resective and disconnective epilepsy surgeries.
In addition to our current research projects, including the Global Pediatric Epilepsy Surgery Registry, the following discoveries were made by scientists where we have either initiated, funded, and/or assisted with participant recruitment and/or travel costs for their studies:
Dr. Andrew Gordon, Ph.D., is a Professor of Movement Science and Neuroscience & Education at Teachers College, Columbia University. He is the Project Director of the Center For Cerebral Palsy Research In Hand Motor Control at the university, and has been intimately involved in studies of hand motor control in healthy individuals and cerebral palsy since 1990. Dr. Gordon has authored more than 90 publications to date. He has focused the knowledge gained from these studies into modifying and testing constraint induced use therapy for use in children with hemiplegic cerebral palsy since 1998, and has been the Principal Investigator on a CI therapy trial funded by the National Institutes of Health.
Hand/Arm Bimanual Intensive Training (HABIT) is a new therapy developed at Columbia University. Its primary aim is to improve the use and coordination of both arms in daily living. Unlike constraint-induced movement therapy, which focuses on only the use of the hemiparetic arm and hand, HABIT focuses on improving the ability to perform bimanual activities.
This study, commenced in the summer of 2013, included thirteen children post-hemispherectomy who received 90 hours of Hand-Arm Bimanual Intensive Training (HABIT). Children had clinical hand testing three months before and immediately before attending a camp, and then immediately and three months after camp. The study also include neuro-imaging.
The research concluded:
- Completion of Hand-Arm Bimanual Intensive Therapy (HABIT) appears to be feasible in individuals who have had a hemispherectomy, and could be complimentary or a viable alternative to CIMT.
- Lateralization could not be used as a predictor for hand function (small sample size)
- Improvement of bimanual function and functional goals can be related to the nature of activities prioritized in HABIT
- Future work should focus on bimanual performance and the neural substrates underlying these improvements in a larger sample of individuals.
STATUS: Completed and manuscript submitted for publication.
- View the scientific poster abstract summarizing the results of the study (Downloadable pdf)
- Try Hand Arm Bimanual Training at home with this new How-To guide (Downloadable PDF)
Epilepsy surgery can disrupt endocrine function in children, as discussed in a recent scientific abstract from our Global Pediatric Epilepsy surgery registry. Read the abstract here.
Parents of children born with hemimegalencephaly are often give a “poor prognosis.” Using data from our Global Pediatric Epilepsy Surgery Registry, this scientific abstract presented at the 2020 meeting of the American Epilepsy Society, researchers showed that many children who have hemispherectomy for seizures caused by hemimegalencephaly develop language and other cognitive skills.
When left‐hemisphere reading is compromised: Comparing reading ability in participants after left cerebral hemispherectomy and participants with developmental dyslexia
Reading is of particular importance to us, because children with epilepsy are at substantial risk of reading poorly. Only 42% of children after hemispherectomy, for example, can read. We know that reading in healthy children depends on well-described “building blocks” such as the ability to manipulate phonemes and match them to written letters in a process known as phonological awareness, vocabulary and verbal memory. Because all these skills are mostly in the left hemisphere, our research to date has targeted acquisition of reading skills after left hemispherectomy.
Joanna Christodolou, PhD, of the MGH Institute of Health Professions, Stella de Bode, PhD, and Tami Katzir, PhD, of the University of Haifa, discovered that despite having the same pre-surgical condition (left hemisphere stroke) and same surgery (left hemispherectomy), children after these procedures had different skills when reading. Because each child have different individual strengths and weaknesses, the authors of this study concluded that each child after hemispherectomy should have flexible literacy instruction based on standardized assessments that analyze individual strengths and are used to generate intervention strategies.
STATUS: Completed and published
- A summary of this study is here: Comparing Developmental Dyslexia to Left Hemispherectomy
- Read the final published research paper here.
In another study, Mari Chanturidze, PhD, of the University of Oldenburg, Dr. Gary Mathern of the University of California at Los Angeles, Stanley Dubinsky, PhD, of the University of South Carolina, and Stella de Bode, PhD, investigated what happens when the left hemisphere is resected very early in life and concluded that the isolated right hemisphere uses the same reading “building blocks” as its left counterpart. They did, however, note that there was variability even among children with similar underlying conditions, further supporting the need for flexible literacy instruction and standardized assessments that analyze individual strengths in order to generate intervention strategies.
STATUS: Completed and published.
- A summary of this study is here: Reading and Phonological Processing After Left Hemispherectomy
- Read the final published research paper here.
Language is primarily a function of the left side of the brain. This network typically comprised inferior frontal gyrus, superior temporal sulcus, and premotor regions. In this study, Anna Ivanova and Lucina Uddin, PhD, of the University of Miami, Eran Zaidel, PhD, Dr. Noriko Salamon, and Susan Bookheimer, PhD, of the University of California at Los Angeles, and Stella de Bode, PhD, investigated the pattern of functional connectivity within language networks in the right hemisphere after the left hemisphere has been removed. They found that the functional connectivity is at least partially preserved in the right hemisphere.
STATUS: Completed and published.
- A summary of this study is here: Language Circuits After Left Hemispherectomy.
31 participants were recruited by The Brain Recovery Project at the 2015 and 2016 Hemispherectomy Conference and Family Reunion and travel and lodging costs were provided to the researchers. Forced Choice Card Task showed that children who had surgery for hemimegalencephaly or cortical dysplasia had 71% accurate rate, while those who had surgery for Rasmussen’s encephalitis had a 93% accuracy rate recognizing happy, sad, angry, and scared faces. The Social Responsiveness Scale was also provided. Results showed that 60% of children assessed had mild social deficits in social interaction, with children with Rasmussen’s encephalitis more likely to fall within the normal range than children who had hemimegalencephaly or cortical dysplasia. A manuscript is in preparation for this study.
STATUS: Completed and manuscript in preparation for publication.
A reliable set of functional resting state brain networks is found in healthy people and thought to underlie our cognition, emotion, and behavior. Here, researchers investigated these networks by quantifying intrinsic functional connectivity in six individuals who had undergone surgical removal of one hemisphere. Hemispherectomy subjects and healthy controls were scanned with identical parameters on the same scanner and compared to a large normative sample (n = 1,482). Surprisingly, hemispherectomy subjects and controls all showed strong and equivalent intrahemispheric connectivity between brain regions typically assigned to the same functional network. Connectivity between parts of different networks, however, was markedly increased for almost all hemispherectomy participants and across all networks. These results support the hypothesis of a shared set of functional networks that underlie cognition and suggest that between-network interactions may characterize functional reorganization in hemispherectomy.
STATUS: Completed and published
- Read the published research paper about this study (Downloadable PDF)
- Read the New York Times story about this research here.
Feasibility of robotics-assisted physical and occupational therapy delivered in a camp-like environment
Certain severe epilepsy conditions require treatment with hemispherectomy, a surgery that removes or disconnects the affected cerebral hemisphere, but leaves the individual with many impairments including significant hemiparesis. Limited data exists on rehabilitative techniques or the process of neural plasticity and neural reorganization after hemispherectomy.
This study evaluates the feasibility and efficacy of high-intensity task-oriented rehabilitation, delivered by robot-assisted therapy in an enriched day-camp setting, for improving motor function in patients after cerebral hemispherectomy, as well as the anatomic changes in the brain as a result of the paradigm.
STATUS: This study is ongoing. Rancho Los Amigos Institutional Review Board study #165. Early data shows that a high-intensity, short-duration regimen of robot-assisted rehabilitation:
- Improved upper extremity function and gait endurance;
- Increased cortical thickness in motor areas (primary motor cortex and supplementary motor area);
- Elicited functional improvements and neuroanatomical changes after just eight days of training;
- Elicited improvements even though participants were out of the acute recovery period;
- Was feasible and efficacious delivered in an enriched day-camp setting.
This is the first study to show an increase in functional task performance associated with an increase in cortical thickness in post-hemispherectomy individuals. This study used robot-assisted rehabilitation in a program of short-duration, high-intensity, task-specific training.
- Read a summary of early results of this study from the American Academy of Neurology meeting poster presentation, 2015 (AAN Poster 2015 Robocamp PDF)
- Read a summary of more recent results of this study from the American Congress of Rehabilitation Medicine meeting 2019 (ACRM 2019 poster PDF)
- Learn more about Robocamp, including participant requirements here.
Neuropsychology studies the structure and function of the brain as they relate to specific psychological processes and behaviors. It is seen as a clinical and experimental field of psychology that aims to study, assess, understand and treat behaviors directly related to brain functioning. The purpose of this study at the California Institute of Technology and Travis Research Institute at Fuller Theological Seminary is to understand how childhood hemispherectomy impacts cognitive and social functioning in adulthood. Participants take a variety of tests and puzzles, and complete questionnaires about personal preferences and activities. This testing will be conducted in 3-4 hour sessions across several days, the exact amount of testing time varies from person to person; participants will also be asked to do a series of MRI studies taking 1-1.5 hours.
Status: This study is ongoing. Interested participants should contact our Executive Director, Monika Jones, at firstname.lastname@example.org
This first-of-its-kind research meeting convened patients, parents, researchers, and clinicians to discuss the state of research on functional outcomes after large resective or disconnective epilepsy surgeries in childhood, identified research gaps, and set patient-centered outcomes research priorities.
- A complete summary of this research meeting is found here.
Scientific workshop on brain plasticity, hemispheric specialization, and neuro-rehabilitation after cerebral hemispherectomy
We convened clinicians and researchers to discuss various aspects of neurorehabilitation after cerebral hemispherectomy in childhood.
- Read our final report to the National Institutes of Health about this workshop (NIH Conference Summary PDF)
- View the workshop agenda (Scientific Conference Agenda PDF)