Julia’s Fund: Bringing Big Data to Psychiatry

September 7, 2019

Harry Kasparian has spent more than 35 years as a leader in the technology field. An engineer and businessman who founded a successful data analytics company, Kasparian understands the value of science, data, and research.

Fueled by the grief of losing his beloved daughter, Julia, in 2016, Kasparian focused his intelligence and expertise on creating a unique research collaboration aimed at increasing our understanding of the neurobiology of trauma. He established the Julia Kasparian Fund for Neuroscience Research at McLean and, in doing so, brought together two organizations that mean a great deal to him. Julia’s Fund is forging an innovative partnership between clinical researchers at McLean and data scientists in the department of Bioinformatics and Computational Biology at Worcester Polytechnic Institute (WPI), his undergraduate alma mater.

“Julia was smart, kind, loving, and giving,” said Kasparian. “She always put the needs of others first. She was a straight-A student at Bates College and devoted extraordinary energy to volunteering and raising funds for causes she believed in, especially ending the stigma of mental illness.”

Despite the outward image of a bright and happy young woman, Julia battled mental illness.

Man and dog sit on bed

Harry Kasparian sits in Julia’s bedroom with her dog.

“She was incredibly committed and worked tirelessly to get healthy,” continued Kasparian. “But she also hid her pain from those who cared so much for her. In the end, hopelessness prevailed and, tragically, she gave up. No one should have to suffer the loneliness and despair that Julia did.”

Kasparian is doing his best to make sure of that.

Julia’s Fund is underwriting a project that uses machine learning—a branch of artificial intelligence—to make sense of large-scale imaging and symptom data from McLean. These data, gathered with permission from a group of patients with histories of dissociation, depression, trauma, and suicidal behaviors, will be analyzed using machine learning methods in collaboration with WPI scientists. The ultimate goal is to help clinicians begin to recognize different psychiatric disorders through their neural signatures in order to provide better interventions earlier in the course of illness.

“If we can predict the disorder and really understand what’s going on, then we may be able to target areas of the brain for treatment using different modalities,” explained Milissa Kaufman, MD, PhD, director of the Dissociative Disorders and Trauma Research Program at McLean. “The hope is also to do brain imaging before and after treatment to measure effectiveness.”

The Trauma Link

The patients being studied have a type of PTSD that includes dissociative symptoms—a sense of disconnection from their bodies, their sense of self, and their surroundings. “The patients I work with say things like, ‘I live in my head,’ or ‘I feel that my body somehow doesn’t belong to me,’” said Kaufman. “The world around them feels dream-like—or they feel like they’re watching a movie.” Often, but not always, these patients have histories of overwhelming trauma and stress during childhood. According to Kaufman, 1 to 3% of the population suffers from a complex dissociative disorder.

McLean will gather and provide extensive data on 110 research participants, including brain images from several types of MRIs, genetic information, and clinical data on their symptoms, suicide attempts, trauma history, and more. The beauty of the computational techniques the WPI scientists use is that they get “smarter” as more data is fed into them, so in the second and third years of the study, information from additional patients will be analyzed, perhaps with even more revealing results. While research on complex dissociative disorders has been done for a quarter of a century, funding has been scarce, Kaufman said, in part because they are still heavily stigmatized compared to illnesses like depression.

“What moves me most is how Julia’s father has initiated this research in his daughter’s name,” said Kaufman. “This is how we will make progress in helping other people who are struggling. And that’s the most important thing.”

Other McLean faculty and staff involved with the WPI collaboration include Blaise Frederick, PhD, Staci Gruber, PhD, Lauren A. M. Lebois, PhD, Cori Palermo, MA, Kerry J. Ressler, MD, PhD, and Sherry Winternitz, MD.

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