What Happens When Research Leaves People Out

More than 8 billion people of different races and ethnicities live around the world.1 When scientists do research studies, it’s important to have information on as many people as possible. This helps doctors learn why diseases affect people of different races in different ways.

But, there’s a problem: most of the information scientists have is not from diverse populations.2 When scientists don’t study enough people from all backgrounds, they can’t learn things like why some ethnicities or racial groups get certain diseases more often, which medicines work best for different people and how to help everyone stay healthy. This is why studies like RECOVER must include people from groups that aren’t always included in research.3

The RECOVER Observational Cohort Study finished enrollment on December 31, 2024 with close to 30,000 people at over 200 study sites across the country. When RECOVER started, researchers wanted to make sure everyone had a chance to be a part of it, especially groups that have been left out of research before. This includes people from big cities, suburbs near big cities, and rural areas far from these cities. To reach people who couldn’t come in person, RECOVER also had the option for them to participate from home. RECOVER’s focus on diversity (including participants from different backgrounds and communities) has helped us see how Long COVID can affect anyone. The table below shows the different races and ethnicities of the RECOVER participants compared to the overall US population in 2020.

White, non-Hispanic, Latino or Latinx
Latino, Latinx or Hispanic
Black or African American
Asian
Native Hawaiian and Other Pacific Islander
American Indian or Alaska Native
Multiple Races
US Population4
White, non-Hispanic, Latino or Latinx
60%
Latino, Latinx or Hispanic
19%
Black or African American
14%
Asian
6%
Native Hawaiian and Other Pacific Islander
less than 1%
American Indian or Alaska Native
1%
Multiple Races
3%
Adult Cohort
(Enrollment Complete)5
White, non-Hispanic, Latino or Latinx
55%
Latino, Latinx or Hispanic
16%
Black or African American
15%
Asian
6%
Native Hawaiian and Other Pacific Islander
less than 1%
American Indian or Alaska Native
2%
Multiple Races
8%
Pediatric Cohort
(Enrollment Complete)6
White, non-Hispanic, Latino or Latinx
46%
Latino, Latinx or Hispanic
13%
Black or African American
10%
Asian
4%
Native Hawaiian and Other Pacific Islander
1%
American Indian or Alaska Native
3%
Multiple Races
17%
Autopsy Cohort
(Enrollment Complete)7
White, non-Hispanic, Latino or Latinx
57%
Latino, Latinx or Hispanic
17%
Black or African American
14%
Asian
0%
Native Hawaiian and Other Pacific Islander
1%
American Indian or Alaska Native
3%
Multiple Races
6%

1 https://www.census.gov/popclock
2 https://nyscf.org/resources/the-lack-of-diversity-in-biomedical-research-has-deadly-consequences
3 https://grants.nih.gov/policy-and-compliance/policy-topics/inclusion/women-and-minorities
4 https://www.census.gov/quickfacts
5 RECOVER Initiative Adult Cohort Data on File
6 RECOVER Initiative Pediatric Cohort Data on File
7 RECOVER Initiative Autopsy Cohort Data on File

NOTES

  • The social determinants of health that led to COVID infections in some groups may also make it harder for people to participate in a research study. These challenges can include lack of access to healthcare, finding childcare, not having paid sick leave for study visits, and other reasons.
  • The above numbers for the enrolling cohorts are as of January 1, 2025. For the most up-to-date information, click here.
  • Since RECOVER participants can pick more than one racial identity or none, the above totals may be more or less than 100%.
  • The above tables are not meant to fully show all races and ethnicities in the RECOVER studies or United States.