How do you research the effects of long COVID-19 on Black and brown people when most volunteers for medical studies are white?
University of Minnesota researchers this year started recruiting participants for a study on long COVID. MRI scans, they said, could help shed light on the reported neurological symptoms of the condition, such as headaches and brain fog.
The COVID-BRAIN Project researchers especially want to study those effects in individuals hit hardest by the virus: Black, Latino and Native people. But of the 26 enrolled participants so far, all are white and 19 are female.
That demographic snapshot may be frustrating for researchers, but it isn't surprising: Most participants in long COVID surveys are white women, principal investigator Dr. Gulin Oz said, and most COVID research has skewed disproportionately white. This phenomenon not only exemplifies the hurdles of recruiting a diverse group of participants, but it also increases Oz's worry that people who may not be as vocal about their symptoms aren't getting help.
"We don't want to learn about long COVID only in the white population. That's not good science and that's not good representation," said Oz, a professor in the Center for Magnetic Resonance Research in the U's Department of Radiology.
Even though significant research on long COVID is starting to emerge, experts still haven't scratched the surface on how racial differences may affect patients' experiences. .
A Scottish study published in the journal Nature in October became the most recent big-population study of long COVID, looking at a large cohort of almost 100,000 participants. But Scotland is 96% white, the authors of the study acknowledge, so the findings can't be extrapolated to populations with more diversity.
The COVID-BRAIN Project has set the bar high: Researchers aim to enroll 20% to 25% Latino participants and 15% Black participants to reflect the U.S. demographics of COVID-19 patients. While there aren't specific targets for Native American and Asian populations, investigators hope to recruit participants from both groups.
LaToya Lewis is a 35-year-old St. Paul woman who had long COVID and whose son was hospitalized with COVID. She said she hopes that such research could lead to less suffering in the Black community.
"If our culture responds differently to different things," Lewis said, "it's important to have that knowledge and the best treatment for our specific cultures, because at the end of the day, every life matters."
What, precisely, is long COVID? The U.S. Centers for Disease Control and Prevention (CDC) defines it as a condition in which COVID symptoms persist for more than four weeks.
Symptoms vary and range from general issues (fatigue, coughing, chest pain, belly pain) to neurological issues (headaches, brain fog). Long COVID can be easily confused with other conditions, such as chronic fatigue syndrome.
There are no treatments specific to long COVID yet, although doctors can help patients manage symptoms. For Lewis, the condition meant not being able to smell anything for nearly a year. But many people remain unable to work or participate in daily life, months after falling ill.
Researchers and clinicians hope that better understanding the condition could help in the development of new treatments.
Oz had previously used MRI technology to study neurological issues and diabetes. She realized early in the pandemic, however, that she should pivot her brain research to study COVID.
She and others in her field were alarmed when they heard of individuals experiencing brain fog and headaches weeks after a COVID-19 diagnosis. Just months into the pandemic, Oz co-wrote a grant requesting funding from the National Institutes of Health to study possible effects of COVID on the brain.
In May 2020, Oz and collaborators from the Mayo Clinic and Harvard University Medical School decided, "Let's study it long term, focusing on the groups most severely affected," she said.
According to the CDC, Native people are 2.7 times more likely than white, non-Hispanic people to be hospitalized for COVID-19 and 2.1 times likelier to die from the disease; Black people are 2.3 times more likely to be hospitalized and 1.7 times more likely to die from COVID-19; and Hispanic people are twice as likely to be hospitalized for COVID-19 and 1.8 times more likely to die from the disease.
"We really don't know if they're also at higher risk of long COVID," Oz said. "We don't see why not, but there's not enough data out there."
The research team is recruiting and screening participants at five sites: the University of Minnesota, the Mayo Clinic in Rochester, Houston Methodist Research Institute, Massachusetts General Hospital and Johns Hopkins University School of Medicine.
The researchers knew standard practices, such as recruiting via websites, probably wouldn't reach the communities that the COVID-BRAIN Project wants to include, Oz said. And they knew making a racially balanced cohort would present multiple challenges.
In order to attract individuals who speak Spanish, the team hired study coordinator Alfredo Lorente, who is originally from Puerto Rico and speaks English and Spanish.
Much of his written translation work will be saved and reused in research to be conducted in Spanish, he said.
The researchers also chose sites in a wide geographic area and in cities with more diversity; within cities, they're planning outreach in specific communities.
Oz acknowledges that many people of color are hesitant to participate in studies because of the history of harmful research practices in the U.S.
"But we need their help, and we need studies to represent them too," she said.
In the U study, researchers will scan participants who have had confirmed cases of COVID and have ongoing neurological symptoms. The research team will also re-scan these participants in two years. The same person, Dr. Kejal Kantarci of the Mayo Clinic in Rochester, will read all participants' MRI scans to ensure consistency.
It's possible that biological reasons could explain potential differences between races, Kantarci said, or that health disparities could play a role.
It's much too early to guess more precisely what they will find, she said, but any differences "have to be addressed, and I think our study is ideal to do that."
Researchers hope to start analyzing data in 2023 and may have results from the first round of participant visits in 2024.
This story comes to you from Sahan Journal, a nonprofit newsroom dedicated to covering Minnesota's immigrants and communities of color. Sign up for its free newsletter to receive stories in your inbox.