Diverse Participation Is Critical Part of Major Bipolar Disorder Study
Johns Hopkins psychiatrist Erica Richards will lead a team of recruiters to enroll people who are frequently left out of research.
Researchers across the United States are taking a fresh look at a disease that has long vexed the world of medicine. Although the National Institutes of Health estimates that bipolar disorder affects about 8 million Americans, it has been a difficult and expensive disease to investigate. The Johns Hopkins University School of Medicine is among six institutions poised to study bipolar disorder through a five-year philanthropic effort assembled by the Milken Institute. The project is funded at $2.25 million annually.
Breakthrough Discoveries for thriving with Bipolar Disorder, shortened to BD2, aims to study 4,000 people who have the disease. In addition to Johns Hopkins, recruitment and investigation will take place at the Mayo Clinic; the University of California, Los Angeles; the University of Michigan; UTHealth Houston; and Brigham and Women’s Hospital.
Fernando Goes, director of the Stanley and Elizabeth Star Precision Medicine Center of Excellence in Mood Disorders, will lead the BD2 effort at Johns Hopkins while David Bond, director of Johns Hopkins’ bipolar disorders clinic, will serve as clinical lead.
Erica Richards, chair and medical director for the Department of Psychiatry and Behavioral Health at Johns Hopkins Medicine’s Sibley Memorial Hospital in Washington, D.C., will lead recruitment efforts with a focus on including participants historically overlooked in research.
“We’re interested in learning about differences in who bipolar disorder affects and differences in outcome,” Richards says. “If we study a homogeneous population, we get no insight into how the disease affects different communities. And it’s not only about culture or race. It also includes age, sex and other environmental factors.”
Bipolar disorder, formerly known as manic depression, affects a person’s mood, activity, energy, cognition and concentration. Bipolar 1 disorder is characterized as having at least one manic episode as well as depressive episodes. Bipolar 2 disorder is defined by less pronounced hypomanic symptoms along with depression. At its outset, BD2 research will be limited to participants with bipolar 1.
Richards says the bulk of her recruitment efforts will center in Washington, D.C., at colleges, particularly historically Black colleges and universities. When she speaks to groups about bipolar disorder, she will also emphasize the importance of getting broad representation in studies such as BD2. One reason so little is known about how the disease affects Black Americans, she explains, is due to their longstanding distrust of medical research.
Also to blame is another stereotype: the belief that many groups, particularly Black Americans, will not participate in studies of mental illness because of the cultural stigma attached to the disease.
“In recent years, however, people have become a lot more open about mental health,” Richards says. She hopes the study will reveal more about how environmental stressors that are common to underserved communities, such as violence and the lack of access to transportation and healthy food options, may affect bipolar disorder.
She says BD2 will also offer its participants access to care. Richards points out that many people with bipolar illness never get diagnosed or don’t know where to turn if they do.
“We’re planning for different scenarios [that potential participants might face in getting treatment],” she says. “Maybe someone doesn’t have insurance. Maybe someone can’t get away from work during regular hours. I want to make sure those don’t become barriers [to taking part in the study].”