A.J. Trustey Epilepsy Research Endowed Fund

A.J. Trustey Epilepsy Research Endowed Fund

Barbara Dworetzky, MD, Trustey Fund director and Chief of the Brigham Division of Epilepsy (front row, second from the right), with her team.

2019 TRUSTEY FUND UPDATE

The A.J. Trustey Epilepsy Research Endowed Fund at Brigham and Women’s Hospital was established by the Trustey family to support innovative epilepsy research with the goal of transforming care for the millions who confront this devastating disease. Through the outpouring of support in memory of A.J., Joe, and Anna Trustey, our researchers continue to lead the way in groundbreaking research for patients and families worldwide.

We welcome your partnership. To make a new gift, contact Ginny Fuller at vgfuller@bwh.harvard.edu or 617-424-4329.

2018 TRUSTEY FUND RECIPIENT

Sleep-Wake Activity Patterns in the Epilepsy Monitoring Unit
Veronique Latreille, PhD
Research Fellow, Brigham Division of Epilepsy

Psychogenic non-epileptic seizures (PNES) are a common neurological disorder believed to be caused by emotions, stress, or other psychological triggers, not by abnormal electrical activity in the brain. Patients who experience PNES often have complex medical histories that include post-traumatic stress disorder, depression, and anxiety, as well as sleep disturbances such as nightmares, insomnia, and sleep fragmentation. Although poor sleep quality is a common complaint in patients with PNES, very few studies have examined whether sleep is a contributing factor in the disorder.

A trained neuropsychologist, Dr. Latreille is working under the mentorship of Milena Pavlova, MD, a Brigham neurologist and expert in sleep medicine, and Barbara Dworetzky, MD, chief of the Brigham Division of Epilepsy, to explore the relationship between sleep and PNES by comparing sleep-wake patterns in patients with PNES to those with epilepsy. The study will use validated sleep questionnaires and sleep measures to better characterize sleep problems in PNES, and the research team will follow patients for two to three weeks after their stay in the Brigham Epilepsy Monitoring Unit to assess outcomes. By expanding our understanding of specific sleep problems in PNES, Dr. Latreille hopes to shed light on the causes and manifestations of PNES, which may ultimately lead to new targeted therapies and improved quality of life for patients with this complex condition.


UPDATES FROM PREVIOUS TRUSTEY FUND RECIPIENTS

Antiepileptic Drug Clearances During Pregnancy and Clinical Implications for Women with Epilepsy
Emma Voinescu, MD, PhD
Associate Neurologist, Brigham Division of Epilepsy

Dr. Voinescu is working to refine epilepsy management during and after pregnancy. Pregnancy-related physiological changes can alter the way medication is absorbed and how quickly drugs are cleared from the body, leading to low antiepileptic drug concentrations and an increased risk for seizures.

During pregnancy, the rate at which the kidneys filter blood (known as the glomerular filtration rate, or GFR) is usually elevated. Dr. Voinescu hypothesized that these changes may have a major impact on how quickly drugs are cleared from the body. To explore this idea, she evaluated the increased clearance rate of one of the most commonly used antiepileptic drugs, levetiracetam, in 31 pregnant women. By calculating drug clearance range and time-course during different stages of pregnancy, she discovered a correlation between increased drug clearance and changes in GFR. Dr. Voinescu’s findings provide new insights for the clinical management of pregnant women with epilepsy.

In other efforts, Dr. Voinescu is working with her mentor, Dr. Page Pennell, to optimize the way we collect clinical information for patients of childbearing age. Drs. Voinescu and Pennell treat a high volume of pregnant women, and they are rigorously tracking pregnancy-related fluctuations in antiepileptic drug serum concentrations, seizure frequency, and dose adjustments in the preconception, pregnancy, and postpartum periods. This past year, they developed a database to more easily collect relevant clinical information, and to ensure accuracy of the data collected and potential use for clinical research.

 

Psychiatric Symptoms in Epilepsy
Daniel Weisholtz, MD
Associate Neurologist, Brigham Division of Epilepsy

Dr. Weisholtz is working to improve our understanding of the relationship between seizures and the psychiatric symptoms that often follow—including depression, anxiety, and psychosis. In his study, he is combining data from seizures recorded on EEG with detailed psychiatric assessments and chart reviews to determine which psychiatric conditions and medications might predispose patients to psychiatric symptoms after seizures. Ultimately, Dr. Weisholtz aims to identify novel treatment approaches that could significantly improve quality of life for patients with epilepsy.

After completing study recruitment in June 2018, Dr. Weisholtz is now analyzing data. He presented preliminary findings at the American Epilepsy Society’s Annual Meeting in December 2018.

Read more about Dr. Weisholtz’s research: Psychiatric Symptoms in Epilepsy

 

Transitioning from Pediatric to Adult Care: Improving the Current Care Model
Tadeu Fantaneanu, MDCM, FRCPC
Former Clinical Fellow, Brigham Division of Epilepsy

Dr. Fantaneanu and collaborators at Boston Children’s Hospital (BCH) established a transition clinic model between BCH and the Brigham to assist patients with epilepsy who are transitioning from pediatric care at BCH to adult care at the Brigham. The team conducted a pilot study to assess patient, family, and caregiver satisfaction, and to compare transition success rates between patients transferred within and outside of this new model. Preliminary data suggest the process of transition is associated with improved patient and caregiver satisfaction.

Currently, the transition clinic is staffed with new pediatric and adult specialists who have continued and enhanced the work from the initial model launched in 2015. Dr. Fantaneanu and a collaborative team of specialists from BCH and the Brigham are writing a manuscript summarizing their efforts and the transition model, which will soon be published. Through this study, Dr. Fantaneanu aimed to improve safety and enhance the quality of care for patients and their families. The Trustey Fund helped to spearhead this initiative from the beginning, and we are deeply grateful.

Read more about Dr. Fantaneanu’s research: Transitioning from Pediatric to Adult Care

 

Seizure Detection and Sleep-Dependent Memory Consolidation in Epilepsy
Rani Sarkis, MD, MSc
Associate Neurologist, Brigham Division of Epilepsy

In collaboration with Robert Stickgold, MD, PhD, from the Center for Sleep and Cognition at Beth Israel Deaconess Medical Center, and researchers from the Massachusetts Institute of Technology, Dr. Sarkis is conducting a pilot study to explore the relationship between seizures, memory, and cognition in patients with epilepsy, particularly elderly patients. The goal is to shed light on sleep quality and its relationship to memory consolidation, develop new methods for detecting seizures, and develop new therapeutic strategies for memory deficits in patients with epilepsy.

Dr. Sarkis and his team have now recruited 88 patients and 13 control subjects, creating a rich dataset that will allow them to address a number of questions related to sleep quality and cognitive difficulties in elderly patients with epilepsy. To expand their work, they are collaborating with colleagues at Massachusetts General Hospital to analyze data from patients who have epilepsy and Alzheimer’s disease. In the coming months, they will present two abstracts at the American Epilepsy Society’s Annual Meeting, and they will submit their study findings for publication.

Read more about Dr. Sarkis’s research: Seizure Detection and Sleep-Dependent Memory Consolidation in Epilepsy

 

Neurological and Emotional Symptoms Program Initiative
Gaston Baslet, MD
Chief of Neuropsychiatry, Brigham Division of Psychiatry

Dr. Baslet is working to develop a comprehensive, multidisciplinary program to help coordinate care for patients with psychogenic nonepileptic seizures (PNES) and other functional neurological symptoms. Specific therapies to address PNES are an essential component of such programs. Dr. Baslet recently completed a pilot study with 49 PNES patients to evaluate the efficacy of mindfulness-based psychotherapy (MBT) in reducing seizure frequency, intensity, and duration, and improving quality of life as well as psychiatric symptom severity. In MBT, people learn skills such as stress management, mindful meditation, and the application of mindfulness to emotional and cognitive processes to relieve distressing symptoms. Studies have shown that MBT is effective in treating many neuropsychiatric disorders.

Although the results of Dr. Baslet’s investigation were promising—patients who completed the program experienced decreased seizure frequency and intensity, as well as an improved quality of life—additional research is needed to further evaluate the effectiveness of MBT for patients with PNES. Dr. Baslet and his team will present their findings in March 2019 at the American Neuropsychiatric Association meeting.

Read more about Dr. Baslet’s research: Neurological and Emotional Symptoms Program Initiative


HOW TO HELP

To learn more about the A.J. Trustey Epilepsy Research Endowed Fund or how to make a gift—including instructions about giving through your donor-advised fund—please contact Ginny Fuller at vgfuller@bwh.harvard.edu or 617-424-4329.