All of Us COVID-19 Research Initiatives

The All of Us Research Program has launched several research initiatives in response to the coronavirus disease 2019 (COVID-19) pandemic. These initiatives, detailed in a June 2020 press release from the program, are as follows:  

  • Antibody testing: Blood samples from over 24,000 participants were assessed for coronavirus antibodies to help researchers understand the prevalence of coronavirus exposure among All of Us participants and its variability across population groups and geographic regions [see Althoff, K., Schlueter, D.J., Anton-Culver, H., Cherry, J., Denny, J., Thomsen, I., ... Schully, S. (2021). Antibodies to SARS-CoV-2 in All of Us Research Program participants, January 2 - March 18, 2020. Clinical Infectious Diseases, ciab519, https://doi.org/10.1093/cid/ciab519.

  • COVID-19 Participant Experience (COPE) survey: Participants who have completed the Basics survey have been invited to complete COVID-19 specific surveys to help researchers understand the effects of the COVID-19 pandemic on participants’ physical and mental health. The survey also includes questions about COVID-19 symptoms, social distancing, and economic impacts.

  • Electronic health records: Methods for standardizing electronic health record information specific to COVID-19 tests, diagnoses, symptoms, and treatments are being explored to help researchers look for patterns, learn more about COVID-19 symptoms and associated health problems, and explore the effects of different medicines and treatments.

 

Table 1: Anticipated Timelines & Availability of Data for All of Us COVID-19 Initiatives

Initiative Public Data Tier Registered Data Tier Controlled Data Tier
Antibody Testing 2021 N/A TBD
COPE Survey December 2020;  Aggregate counts of all survey responses December 2020; Row level data for all survey responses except COVID tests and diagnosis. See Table 2 below for specific fields suppressed including standard Registered Tier privacy rules TBD; Row level data for all survey responses anticipated. Privacy generalizations TBD
EHR TBD; Aggregate counts of all COVID-19 tests, diagnoses, symptoms, and treatments anticipated N/A TBD; Row level data for all COVID-19 tests, diagnosis, symptoms, and treatments anticipated. Privacy generalizations TBD


COVID-19 Participant Experience (COPE) Survey Data Resources

The COPE survey was first circulated to participants for a one month period in May 2020. A second monthly survey was circulated in June, another in July (which remained open for completion through September), November, and December. Surveys underwent minor, iterative changes month-to-month. An outline of changes can be found here. All response data except COVID-19 test and diagnoses are available to researchers in the Registered Tier (see Table 2 below for exact concepts suppressed). As with all other All of Us surveys, these data are mapped to an All of Us specific PPI vocabulary and stored in the OMOP observation table. For additional information on using COPE Surveys in your research, please see our Featured Workspace on “How to Work with All of Us Survey Data” found here.

   

Table 2: Survey Question Fields Suppressed from the Registered Tier

Survey Topic Item Display Concept ID

COVID-19 Related Symptoms

Approximate date of onset

715711

COVID-19 Related Testing

Were you tested for COVID-19 in the past month?

1333327

COVID-19 Related Testing

How many times were you tested?

1333118

COVID-19 Related Testing

Was the test for COVID-19 positive?

1333326

COVID-19 Related Testing

How were you tested?

1333014

COVID-19 Related Testing

Did you have difficulty with the following aspects of getting a test for COVID-19? Please select all that apply.

1310145

COVID-19 Related Testing

What was your reason(s) for testing for COVID-19? Please select all that apply.

1310144

COVID-19 Related Treatment

In the past month, if you were diagnosed with COVID-19 related symptoms, did you receive treatment?

1333324

COVID-19 Related Treatment

What type of breathing treatment did you receive?

1333012

COVID-19 Discrimination

What do you think is the main reason for these experiences? Select all that apply.

715725

 



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