Illustration: Aïda Amer/Axios
In an effort to better understand how COVID-19 affects underrepresented communities, the National Institutes of Health is expanding antibody testing, surveying personal impacts and collecting electronic health data.
Why it matters: Underrepresented communities have experienced a large portion of severe complications and death from the pandemic, but researchers don't know all the reasons why. NIH hopes to learn more on this, while also shedding light on when the coronavirus entered the country.
What's happening: NIH plans to leverage and build upon information and biosamples it had started gathering before it knew the pandemic would reach U.S. shores, through its long-term program to build one of the most diverse health databases called All of Us.
- The program, begun in 2018, has enrolled almost 350,000 participants so far from across the U.S., half of whom are from racially and ethnically diverse populations and more than 80% from underrepresented communities overall, All of Us CEO Josh Denny tells Axios.
What they're saying: "We are all right now thinking about diversity and the need for more inclusiveness in our studies. We've certainly seen how COVID-19 has ravaged communities of color more than other populations. And, really this is what All of Us is designed to think about," Denny says.
- Namandjé Bumpus, professor and chair of the pharmacology department at Johns Hopkins University School of Medicine, tells Axios that NIH's program is "on the right side of this, and leading" these efforts.
How it works: NIH is launching three main parts to its COVID-19 endeavor.
1. Testing for IgG antibodies in blood samples taken from participants March 18 back toward January, that had been collected as part of their research program.
- They will do this in batches of 5,000 and keep analyzing until they no longer find specific SARS-CoV-2 antibodies, Denny says, which means they'll look at between 5,000 and 30,000 or more samples.
- "It will really help us look at what has happened. ... We'll actually go back further than January if we continue seeing positive cases. There's some thought, you know, that the virus entered the Unites States before 2020," Denny says.
2. Conducting a COVID-19 Participant Experience (COPE) survey of people who've had COVID-19, along with some who had not. The survey started in May, was repeated in June and will be continued in July.
- They are asking a range of questions from symptoms experienced to social-distancing efforts to how it's affected them overall.
- "Did they lose their job? Did their income go down? Did their housing status change? Did their relationships change? Was there more stress in their life?" Denny says.
3. Collecting and evaluating relevant data from the electronic health records that in some cases go back decades, Denny says.
- "It's just a really powerful tool to look at a number of different outcomes. ... In some cases, we'll be able to look at people who've been diagnosed with COVID-19 and outcomes over time, as well as maybe risk factors for being diagnosed," Denny says.
- EHRs will be key to analyzing if COVID-19 presents risk factors that appear years after infection and other longer-term possible outcomes, he adds.
What's next: NIH and its partners hope to have some initial antibody data in late summer with fuller results in late 2020 or early 2021.
- Meanwhile, All of Us continues to enroll new participants in the hope of filling the large gaps in knowledge of how genetics and other factors affect the health and medical response of underrepresented communities and prepare better for precision medicine.
Go deeper: