The National Institutes of Health’s All of Us Research Program has reached an important milestone with the release of its initial genomic dataset. The release brings nearly 100,000 whole genome sequences (WGS) and 165,000 genotyping arrays to its data analysis platform, the Researcher Workbench.
Nearly 50% of the data come from participants who self-identify with a racial or ethnic minority group. Mass General Brigham (MGB) has played a major role in this milestone, working to nurture relationships with diverse participants from throughout New England to ensure strong diversity in the dataset, enrolling almost 27,000 participants to date.
The genomic data is available to approved researchers with information from surveys, physical measurements, electronic health records (EHRs), and wearable devices
The program’s Data Browser offers a summary view of genetic data from participants. Using this tool, anyone can search for specific genes or variants and see aggregate counts of their frequency in the All of Us dataset and the genetic ancestry of participants with each variant.
Detailed genomic data is available in the Researcher Workbench Controlled Tier, a heightened access level. As with all data in the Workbench, no direct participant identifiers are included, to protect participant privacy.
To get access, researchers must complete training, sign agreements for responsible data use and must get sign-off from their institutions. Once registered, researchers can use the data for a wide range of studies.
Controlled Tier Data and Access
Detailed genomic data are accessible through the Controlled Tier, a level of the Researcher Workbench with stricter requirements for access. This level also includes all of the data currently available in the Registered Tier, as well as additional clinical fields in EHRs, and more granular demographic data from both surveys and EHRs. For example, in the Controlled Tier, researchers can find additional International Classification of Diseases (ICD) codes for COVID-19 testing and diagnosis data, real dates of health events, and residential information (first three digits of the ZIP code).
The Controlled Tier is available to registered researchers who have and eRA commons account, have completed additional training and whose institutions have an additional data use agreement (DUA) in place with All of Us including MGB. MGB has an institutional DUA in place.
Register as an All of Us Researcher
The All of Us Researcher Workbench houses in-depth data, a powerful analytics platform, and a variety of tools to conduct a wide range of studies. Below is an overview of the steps required to access the All of Us Registered Tier and Controlled Tier data. You can visit the Researcher Workbench registration page directly to get started.
How to Register:
- Learn more about the available data by exploring the All of Us Data Browser, which provides interactive views of aggregate-level participant data.
- Check for your institution’s agreement. MGB already has an Institutional Data Use Agreement (DUA) in place with All of Us to ensure data security. Non-POI investigators with a National Institutes of Health (NIH) eRA Commons account can now register for access to All of Us
- Create a Researcher Workbench account. Complete your researcher profile, sign the Terms of Service, and agree to the Privacy Policy.
- Verify your identity using Login.gov. You may need to provide an SSN and a state-issued ID.
- Complete All of Us Research Training. The mandatory training provides education on conducting responsible and ethical research with data from All of Us Please allow at least one hour to complete.
- Sign the data user code of conduct. The Data User Code of Conduct is an agreement that outlines the program’s expectations for researchers.
Currently, it takes about 2-3 business days for approval once an application is submitted. Note that only MGB employees are eligible, not researchers who are affiliated with MGB as POIs.
All of Us Data Use Cases from Local Investigators
Several Mass General Brigham-affiliated investigators and All of Us New England partners have already demonstrated the usefulness of the program’s data through their own research, including:
- Elizabeth W. Karlson, MD, MS, a co-author of the recent COVID-19 antibodies study that offers new evidence of early SARS-CoV-2 infections in U.S. Althoff KN, et al, “Antibodies to SARS-CoV-2 in All of Us Research Program Participants,” January 2-March 18, 2020, Clinical Infectious Diseases, 2021; https://academic.oup.com/cid/article-lookup/doi/10.1093/cid/ciab519
- Jordan W. Smoller, MD, ScD, has used All of Us data to study the mental health effects of discrimination during the pandemic. Lee, Younga H., et al, “Effect of everyday discrimination on depression and suicidal ideation during the COVID-19 pandemic: a large-scale, repeated-measures study in the All of Us Research Program,” January 7, 2022, medRxiv, https://doi.org/10.1101/2021.12.06.21266524
- Paulette Denise Chandler, MD, MPH, who has used All of Us data to examine the prevalence of hypertension (HTN) among groups traditionally underrepresented in medical research compared to data from the 2015-2016 National Health and Nutrition Examination Survey (NHANES). Chandler, Paulette Denise, et al, “Hypertension prevalence in the All of Us Research Program among groups traditionally underrepresented in medical research,” June 22, 2020, Scientific Reports, https://www.nature.com/articles/s41598-021-92143-w
- Nyia Noel, MD, MPH, a gynecologist and researcher at Boston Medical Center and Co-I for All of Us New England, uses All of Us data to study hypertensive disorders in pregnancy and uterine fibroids.
To learn more about the All of Us Researcher Workbench, or to register for access, go to https://www.researchallofus.org/register/.
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