How do you research the effects of long COVID-19 on black and brown people when most volunteers for medical studies are white?
Researchers at the University of Minnesota this year began recruiting participants for a Long COVID study. MRIs, they said, could help shed light on reported neurological symptoms of the disease, such as headaches and brain fog.
Researchers from the COVID-BRAIN project particularly want to study these effects in those hardest hit by the virus: Blacks, Latinos and Indigenous people. But of the 26 participants registered so far, all are white and 19 are women.
This demographic snapshot can be frustrating for researchers, but it’s not surprising: Most participants in lengthy COVID surveys are white women, said lead researcher Dr. Gulin Oz, and most research on COVID have been disproportionately white. This phenomenon not only illustrates the barriers to recruiting a diverse group of attendees, but it also heightens Oz’s concern that people who may not be speaking so clearly about their symptoms are not receiving support. assistance.
“We don’t want to know about long COVID just in the white population. It’s not good science and it’s not good representation,” said Oz, a professor at the department’s Center for Magnetic Resonance Research. of radiology from the U.
Even as important research on the long COVID is beginning to emerge, experts still haven’t touched on how racial differences may affect patient experiences. .
A Scottish study published in the journal Nature in October has become the most recent large-population study of the long COVID, involving a large cohort of almost 100,000 participants. But Scotland is 96% white, the study authors acknowledge, so the results cannot be extrapolated to more diverse populations.
The COVID-BRAIN project has set the bar high: researchers aim to recruit 20% to 25% Latino participants and 15% Black participants to reflect the US demographics of COVID-19 patients. Although there are no 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 such research could lead to less suffering in the black community.
“If our culture reacts 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 US Centers for Disease Control and Prevention (CDC) defines it as a condition in which symptoms of COVID persist for more than four weeks.
Symptoms vary and range from general problems (fatigue, cough, chest pain, abdominal pain) to neurological problems (headache, brain fog). Long COVID can be easily mistaken for other conditions, such as chronic fatigue syndrome.
There is no specific treatment for long COVID yet, although doctors can help patients manage symptoms. For Lewis, the condition meant feeling nothing 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 a better understanding of the disease could help in the development of new treatments.
Oz had previously used MRI technology to study neurological issues and diabetes. However, she realized early in the pandemic that she would have to direct her brain research to studying COVID.
She and others in her field were alarmed when they heard of people suffering from brain fog and headaches weeks after being diagnosed with COVID-19. Just months into the pandemic, Oz co-wrote a grant seeking funding from the National Institutes of Health to study the possible effects of COVID on the brain.
In May 2020, Oz and her collaborators at Mayo Clinic and Harvard University Medical School decided, “Let’s study it long-term, focusing on the most severely affected groups,” she said.
According to the CDC, Native Americans are 2.7 times more likely than non-Hispanic white people to be hospitalized with COVID-19 and 2.1 times more likely 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 Hispanics are twice as likely to be hospitalized with 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 for long COVID,” Oz said. “We don’t see why, but there’s not enough data.”
The research team is recruiting and selecting participants at five sites: the University of Minnesota, Mayo Clinic Rochester, Houston Methodist Research Institute, Massachusetts General Hospital, and Johns Hopkins University School of Medicine.
The researchers knew that standard practices, such as recruiting through websites, were unlikely to reach the communities the COVID-BRAIN project wants to include, Oz said. And they knew that creating a racially balanced cohort would present multiple challenges.
In order to attract Spanish speakers, the team hired study coordinator Alfredo Lorente, a native of Puerto Rico who speaks English and Spanish.
Much of his written translation work will be saved and reused in research to be conducted in Spanish, he said.
Researchers also chose sites across a wide geographic area and in more diverse cities; in cities, they plan outreach activities in specific communities.
Oz acknowledges that many people of color are reluctant to participate in studies due to the United States’ history of harmful research practices.
“But we need their help, and we also need studies to represent them,” she said.
In Study U, researchers will analyze participants who have had confirmed cases of COVID and who have persistent neurological symptoms. The research team will also analyze these participants again in two years. The same person, Dr. Kejal Kantarci of the Mayo Clinic in Rochester, will read the MRIs of all participants to ensure consistency.
It’s possible that biological reasons explain the potential differences between races, Kantarci said, or that health disparities could play a role.
It’s far too early to guess more precisely what they’ll find, she said, but any differences “need to be addressed, and I think our study is ideal for doing that.”
The researchers hope to start analyzing the data in 2023 and may have results from the first round of participant visits in 2024.
This story comes from Sahan Newspaper, a nonprofit newsroom dedicated to covering Minnesota’s immigrants and communities of color. Subscribe to his free newsletter to receive stories in your inbox.
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