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’re inviting you to take part in a survey about how the pandemic is affecting you and those around you. It’s called the COVID-19 Participant Experience survey. Or COPE for short. The survey asks questions about how you’re doing and feeling. It also asks about how COVID-19 may be affecting your physical and mental health, your daily life, and your community.
The COPE survey is recurring and will be available each month through February 2021. This means you can take it again and again. We hope you will take this survey, but it is not required. Your answers may help researchers learn how our lives are affected over time. Each time you take the survey, your answers will matter, whether they are the same or have changed.
You can take the survey by logging into your All of Us account.
Researchers are eager to learn more about when COVID-19 arrived 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. We will be testing stored participant blood samples to look for antibodies against the virus that causes COVID-19. Antibodies may tell us if a person has been exposed to this virus in the past. We will test stored samples from the participants who joined most recently. Participants whose samples we are testing do not need to do anything, as we will be testing their stored blood samples.
We will share what we learn from this research with all of our participants. We expect to be able to tell you what we learn from the study overall. To be clear, we plan to let you know in general what we find; we do not plan at this time to give individual participants their own results. This is because we need to learn more about the accuracy of the results for diverse groups and what the results mean for individuals.
COVID-19 is caused by one strain of coronavirus, but there are many types of coronaviruses. Scientists are still learning whether having antibodies means you have been exposed to this new strain or a different one in the past. (Some common colds are caused by viruses related to this new coronavirus.) Scientists also don’t know yet if having antibodies protects you from developing COVID-19 in the future.
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.
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.
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.
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.
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.
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.
If you gave samples to All of Us between Fall 2019 and March 2020, then your sample may be used in the All of Us antibody study. If we find positive results in samples from as far back as November 2019, we will keep testing with samples that were given earlier.
Even if your samples aren’t used for this study, you can still help COVID-19 research by taking the COPE survey and sharing your EHR data.
Antibodies are proteins produced in the blood in response to an infection, such as a virus. They play a critical role in fighting infections and are 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. That test detects an active infection. It is done with a nasal swab at some drive-through clinics, doctors’ offices, and emergency rooms. It is 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.
At this time, we do not plan to give participants their own antibody results. We may do that in the future. First, we want to know more about the accuracy of the results for diverse groups and what the results mean for individuals.
A portal for public information that is curated by the Coronavirus (COVID-19) Task Force at the White House:www.coronavirus.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.