Bipolar disorder is little researched, but doctors at Johns Hopkins aim to change that
Two months before Charita Cole Brown was supposed to graduate from college — and about two years after she experienced her first manic episode and was diagnosed with bipolar disorder — her doctors told her parents they should prepare for the likelihood that she may one day not be able to care for herself.
It was March 1982 and Cole Brown had just experienced a psychotic break eerily similar to what her grandmother had experienced years earlier. Despite her doctors’ prediction that she would never lead a “normal” life, however, within a few years, a counselor had helped Cole Brown find a combination of medication and other wellness strategies that worked for her.
She graduated from college, went to graduate school at Towson University, fell in love and raised two daughters to be “some of the kindest women you will ever meet.” Later, during her parents’ final years, she cared for them both.
“Bipolar is not an easy illness. I don’t have any enemies, I don’t think, but if I had an enemy, I would not wish this on them as a punishment,” said Cole Brown, who lives in Park Heights and published a memoir in 2018 called “Defying the Verdict: My Bipolar Life.”
But, she added, “you can live well.”
More than 40 years after Cole Brown’s diagnosis, bipolar disorder — a serious mental illness characterized by dramatic shifts in mood, energy, activity and cognition — remains under-researched, even compared to other mood disorders. While an estimated 2.6% of Americans who are 18 or older have bipolar disorder, people with the condition, especially those who are Black or African American, are often misdiagnosed.
Researchers and clinicians at the Johns Hopkins School of Medicine, however, hope that will soon change. They’re recruiting people with the diagnosis for a longitudinal study, in which researchers will follow participants for at least five years with the aim of better understanding the disease and how to treat it.
Hopkins is one of six research institutions around the country that were recruited for the project by BD², a Washington, D.C.-based organization launched last year to bring more resources to studying bipolar disorder. Three family philanthropies joined the Milken Institute to fund the organization, together contributing $150 million to accelerate breakthroughs in treating and understanding the disease.
The institutions leading the five-year study — including the Mayo Clinic, University of Michigan and University of California, Los Angeles — plan to recruit 4,000 people with bipolar 1, a type of the disorder characterized by more severe elevated mood episodes than bipolar 2.
Researchers later hope to expand their focus to bipolar 2 as they attract more funding, said Cara Altimus, managing director of BD². While the organization has enough funding to support the project for five years, researchers hope to follow patients for even longer to get a better sense of how their symptoms and the trajectory of their disorder changes as they age.
Projects of this breadth and scope are rare, even for more frequently studied health problems. Longitudinal studies are expensive and require extensive buy-in from scientists, patients and funders — a trifecta that’s hard to nail down. But, Altimus said, they’re incredibly valuable.
“So much of our science is happening in snapshots — in three month intervals, in one year intervals,” she said. “But we all know that our past, medications we’ve taken, life experience very much impact the way that health progresses overtime. And you can’t capture that unless you’re looking over a much longer time period.”
Researchers will collect hordes of data from participants, including annual brain scans and blood samples, as well as information from their smartphones, like when they first and last use the device each day. The results of this process, known as “deep phenotyping,” will be uploaded into a repository shared with all six research sites and will be used to understand differences between disorder subtypes and trajectories.
Hopkins researchers plan to recruit about 300 people for the study and connect with community organizations to ensure they attract a diverse group.
The effort will be led by Dr. Fernando Goes, who is also the director of the school’s year-old Precision Medicine Center of Excellence in Mood Disorders.
There are no eligibility requirements for the study beyond being diagnosed with bipolar 1 and being willing to commit to a long-term project, Goes said. However, he added, participants ideally would be patients in the Hopkins medical system. That way, the study’s findings could be translated easily to improving the patient’s care — even before the project is over.
While that could be accomplished with people who are patients outside of the health care system, Goes said, “the easiest is within our health care system, so that the investigators and the clinicians are either the same people, or they rub shoulders with each other in the hallways.”
Preparations for the study lasted even longer than the study itself is expected to last.
It took 80 months — nearly seven years — of planning and an additional nine months of selecting the sites and preparing them, Altimus said. During the lead-up, researchers surveyed nearly 6,500 people with bipolar disorder, depression or both to ask them what they’d like to be studied.
They listed priorities such as metabolism, sleep, cognition and social engagement, Altimus said — areas that were a departure from the simplistic model researchers often use to examine bipolar disorder, which divides the disease into periods of depression and mania.
“What we often miss is that people with bipolar also experience changes in energy and changes in cognition and changes in ability to engage in life,” Altimus said. “That’s why this study is so important.”
“What we’re really hoping to do is move beyond our understanding of bipolar as just kind of the outward expression of mania and depression and bring this into a space of really understanding the whole person, as bipolar affects them,” she went on, “and how that affects their ability to get out of bed in the morning or their ability to have energy over time or how that affects sleep and wake cycles, or the ability to engage socially or not, or think clearly or not.”
Kerry Graves, executive director of NAMI Metropolitan Baltimore — a mental health organization that aims to bolster public understanding of mental illnesses — spoke excitedly about the fledgling bipolar study. While it’s expensive to study mental health conditions, it’s also expensive to care for someone with a mental health condition, Graves said.
“Mental health conditions, in general, are some of the most treatable conditions out there,” Graves said “If we can get the correct treatment strategies through research, the changes that would make are really, really dramatic.”
It’s been more than 25 years since Cole Brown, the memoir author, was last hospitalized because of her bipolar disorder. Her recovery has survived the death of her husband and parents, as well as her older sister, whom she described as the “glue” of her family.
She gets enough sleep. She takes her medications. She meditates on scripture. She prays. She doesn’t drink alcohol. And above all else, she holds onto hope.
“My life is proof that you can live differently than what people thought,” she said. “It’s also what you think for yourself. What do you have in your heart? What do you believe about who you can become? What are you willing to do to stay well?”
Those interested in participating in the study can email moods@jhu.edu.
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