Patient Testing at Three Top Medical Centers in Boston, Chicago, and Los Angeles
Santa Cruz, CA – February 8, 2017 –
The TLC Foundation for Body-Focused Repetitive Behaviors announces the launch of the first-ever precision medicine study of people suffering from body-focused repetitive behaviors (BFRBs). BFRBs are a category of health disorders that cause repetitive hair pulling (trichotillomania), skin picking (excoriation), and nail biting (onychophagia), among other behaviors. It is estimated that roughly 1-in-20 individuals suffer from BFRBs, which typically begin in adolescence and often go untreated, resulting in physical damage such as bald patches, scarring, and infection as well as the emotional damage of shame and self-imposed isolation.
To date, relatively little federal funding has been devoted to understanding these conditions. In an effort to fill this void, The TLC Foundation for BFRBs raised nearly $2 million from the community of sufferers to develop the BFRB Precision Medicine Initiative (BPMI). The project builds off of state-of-the-art approaches already in use to understand and treat cancer and other medical conditions. These approaches use detailed behavioral, genetic, and biological indicators to describe an individual pattern of disease in order to develop individualized treatments.
With its research initiative, The TLC Foundation for BFRBs aims to collect and categorize data that will form the basis for new, more effective treatments for body-focused repetitive behaviors. At this point in time, many BFRB patients have relatively limited treatment options. There is no medication specifically aimed at treating these behaviors, and specialized talk therapies such as cognitive behavior therapy or dialectical behavior therapy provide only short-term relief. No long-term cure exists.
TLC's BFRB Precision Medicine Initiative is directed by Tara Peris, Ph.D., an associate professor at The Semel Institute for Neuroscience and Human Behavior at UCLA. Dr. Peris oversees the work of three principal investigators from UCLA's Semel Institute, The University of Chicago Medicine, and Harvard Medical School. The researchers are starting to evaluate patients this week and are aiming to see up to 300 patients by the middle of 2018, making this the largest sample of BFRB sufferers ever studied.
Volunteers are expected to devote two days to the evaluation, which will analyze their condition at multiple levels. After an in-depth interview to assess their experience with BFRBs and any other mental health conditions, the volunteers will engage in computerized tasks to test their sensitivity to stress and ability to inhibit responses. They will also undergo functional magnetic resonance imaging (MRI) to reveal how their brains respond to certain stimuli and have blood work that will identify any genetic markers and allow those to be compared with related conditions via the database at the National Institute of Mental Health.
"We are finding that people of all ages are willing to travel from around the country to one of our evaluation sites," said Dr. Peris. "Their willingness to rearrange their lives to make time for this project really speaks to the urgent need they feel to find better, more targeted treatments for these disorders."
Dr. Nancy Keuthen is an associate professor of psychology at Harvard Medical School and Director of its Trichotillomania Clinic and Research Unit. As a member of The TLC Foundation's Scientific Advisory Board and one of the principal investigators on the BFRB Precision Medicine Initiative, she is particularly eager for hard data to share with her colleagues in the mental health field.
"For too long BFRBs have been ignored as a subject of study, even though they affect 3 percent of the population," said Dr. Keuthen, explaining that that number is higher than the number of people afflicted by better-known conditions, including Bipolar and Eating Disorders or Obsessive Compulsive Disorder. "With the advent of precision medicine, we should finally be able to equip practitioners with individualized treatment that will help people change their behaviors and lead happier, healthier lives."
The TLC Foundation for Body-Focused Repetitive Behaviors expects to see the results of the BFRB Precision Medicine Initiative published in peer-reviewed medical journals in approximately two years. For now, people wishing to learn more about the research project and BFRBs generally—or to locate qualified psychotherapists and regional support groups—can visit the foundation's website, www.bfrb.org.