The All of Us Research Program is dedicated to better health, both in the future and today.
To help slow the spread of COVID-19, we have paused all in-person All of Us appointments and events.
We hope that you and your loved ones are staying safe and healthy. During these challenging times, we all want to do our part to stop the spread of COVID-19. As an All of Us Research Program participant, you are already helping in more ways than you know. You are part of a group of about 350,000 participants from all 50 states. With information from so many people, All of Us has the power to help answer questions that few other groups can.
Here are a few of the exciting things that the program is working on to help researchers understand COVID-19.
COVID-19 is affecting many different parts of our lives. Even if we don’t get sick, it may be impacting our physical and mental health. Learning more about this is important for researchers. It could help them better understand COVID-19. That’s why we invited you to take part in the COVID-19 Participant Experience survey through 2020 and early 2021. Called COPE for short, the survey was recurring, which meant you could take it each month it was available. The survey asked questions about how you’re doing and feeling. It also asked how COVID-19 was affecting your physical and mental health, your daily life, and your community.
If you completed one COPE survey or many COPE surveys, thank you! Your answers may help researchers learn how our lives were affected over time. Interested in what participants shared about their health and well-being during this time? Visit the All of Us data browser to learn more.
Researchers are eager to learn more about when and where COVID-19 first began to appear in the United States and how it has spread. As one of the largest and most diverse research resources available, All of Us can help them answer those questions.
What We Did
Antibodies may tell us if a person was exposed in the past to the virus that causes COVID-19. We tested stored blood samples from participants to look for these antibodies. The samples came from participants who joined in early 2020. We tested samples from more than 24,000 participants.
What We Found
As we expected, very few participants had antibodies to the virus. But the places where we found participants with antibodies were not the places we expected. The first reported COVID-19 case in the U.S. was in Washington State. Many states recognized their first confirmed cases in the last week of February or the first week of March 2020. We found antibodies in samples from Illinois, Massachusetts, Mississippi, Pennsylvania, and Wisconsin earlier than previously known cases in those states. This suggests COVID-19 started spreading in the U.S. earlier than experts realized.
About Antibody Testing
Our approach is based on what the CDC has recommended for antibody testing. COVID-19 is caused by one type of coronavirus, but there are many other different types. For example, the common cold is caused by a coronavirus. Rarely, antibody tests can mistakenly detect an antibody for a different coronavirus. This may make the test result look like someone had the virus that causes COVID-19 when they had not. This is called a “false positive.” To help rule out false positives, we first tested all samples with two different types of antibody tests. Samples that had positive results were tested again with two more different tests. This means we checked samples with up to four different tests to make sure our results were right. Since antibody testing for the virus that causes COVID-19 is still new, the information we learned from comparing the four tests is also helpful for scientists to learn about how different antibody tests work.
Note for Participants
Scientists don’t know yet if having antibodies protects you from getting COVID-19 in the future, or how long that protection may last. Even if you have had COVID-19 already, you should keep following public health guidelines until we know more. This could help prevent you from getting COVID-19 again or from spreading it to other people.
To learn more about our antibody study, see our press release.
During a pandemic, it is critical to get good information quickly. In the All of Us Research Program, more than 200,000 participants have shared EHR data. This information tells us so much about your health. It may also tell us if you were diagnosed with COVID-19 or have had symptoms.
COVID-19 affects people very differently. We want to help researchers understand why that is. EHR information can show patterns across different people. This may help explain why some people have certain symptoms and others don’t.
We are working to make sure that EHR information is easy for researchers to use as quickly as possible. As always, your privacy is our top priority. We will remove information that may identify you before we let researchers use the data.
In joining the All of Us Research Program, you signed up to help change the future of health. The health information you share can help researchers learn more about a disease that’s affecting us all. We are so grateful to team up with you. None of these activities would be possible without you. Thank you.
Do you want to spread the word about COVID-19 clinical trial research? While these trials are not part of All of Us, these resources can help you engage community organizations and individuals and encourage participation in clinical trials.
The National Institutes of Health is working with a network of partners to prevent and treat COVID-19. There are a number of clinical trials actively enrolling participants. While these trials are not part of All of Us, you are welcome to learn more about and join these studies.
The All of Us Research Program makes de-identified data available to approved researchers in a database called the Researcher Workbench. The Workbench is now in beta testing. We will add COVID-19 data as soon as possible. For more information about the Researcher Workbench, please visit ResearchAllofUs.org.
Yes. We are collaborating with the National Institute of Allergy and Infectious Diseases, the National Cancer Institute, the Centers for Disease Control and Prevention, the Food and Drug Administration, the UK Biobank, the International 100K Cohorts Consortium, the Frederick National Laboratory for Cancer Research, and other groups. Our efforts, together with those of many others, will help researchers learn more about COVID-19 and its impact on people from all walks of life across the country and the world.
We’ll invite you to complete the COPE survey once a month for as long as the pandemic lasts. Every month, your new answers will matter. This is because your experience of the COVID-19 pandemic may change over time. This is important information for researchers to understand how COVID-19 may affect people differently.
No. We hope you will fill out the survey, but it is not required. The COPE survey and other surveys are optional, and you can choose how much or how little you wish to share. The more questions you answer, the more researchers can learn.
An electronic health record, or EHR, is a digital version of your medical chart. It has information about the health care you've gotten and includes things like health issues, medications, and treatments. As a history of your health care, your EHR can show a more complete picture of your past and present health than surveys or samples alone.
By adding EHR information to our database, we can help researchers study many different health problems, including COVID-19. Researchers may learn more about different symptoms and underlying health conditions, as well as the effects of different medicines and treatments.
Antibodies are proteins produced in the blood in response to an infection, like the kind caused by a virus. They play a critical role in health by warning our bodies about the infection and telling our immune system to fight it. Antibodies are also helpful signs that a person was exposed to an infection or immunization in the past. However, the presence of antibodies does not guarantee that a person is protected from the infection (has immunity), or that protection will last.
Yes. The COVID-19 test detects an active infection. Most COVID-19 infection testing is done with a nasal swab at some drive-through clinics, doctors’ offices, and emergency rooms. Other types of tests (in-home tests, tests using throat swabs or saliva) are also available. These tests are used for people with symptoms or for those who have been exposed to someone who has or had COVID-19.
The antibody test we are doing is a blood test. An antibody test is generally done with people who do not currently have symptoms, to find out if they had the virus in the past.
If you gave samples to All of Us between January 2020 and March 2020, then your sample may have been tested in the All of Us antibody study.
If your sample was tested, we will contact you. You can choose whether you want to see your results.
A website from the National Institutes of Health (NIH) that provides information on the NIH’s response to COVID-19 along with additional resources, news updates, and clinical trial opportunities:covid19.nih.gov
A website from the Centers for Disease Control and Prevention (CDC) that contains consumer and medical information on how the virus spreads, symptoms, prevention and treatment, stigma, cases and what to do if you are sick, along with frequently asked questions:www.cdc.gov/coronavirus
A webpage on USA.gov that is cataloging all U.S. government activities related to Coronavirus:www.usa.gov/coronavirus
For more information on mental health topics and research, visit:www.nimh.nih.gov/health/index.shtml
or visit the Getting Help page:www.nimh.nih.gov/health/find-help/index.shtml
Treatment Facilities Locator:findtreatment.samhsa.gov
For immediate assistance, visit:suicidepreventionlifeline.org/talk-to-someone-now
or call 1-800-273-8255
(En Español: 1-888-628-9454;
Deaf and Hard of Hearing: 1-800-799-4889)
Text HOME to 741741 to connect with a Crisis Counselor or visit:www.crisistextline.org
Your health and well-being are important to us. If you think you may have been exposed to the virus and are experiencing symptoms, please call your health care provider. All of Us is a research program and cannot provide health care.