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First Release of All of Us Program Data, Research Tools Set for Spring 2020

SAN FRANCISCO – At the Molecular Medicine Tri-Conference here on Tuesday, Stanford University researcher and All of Us Research program principal investigator Mitchell Lunn provided an update on the program's progress.

More than 339,000 people have consented to participate in the National Institutes of Health's program, and more than 265,000 people have completed the full protocol, which involves donating biological samples, and sharing a variety of data from electronic medical records, surveys, wearables, and genetic testing.

All of Us is aiming to enroll 1 million Americans. It opened up to participants in 2018.

According to Lunn, more than 50 percent of the participants in the current cohort are from racial or ethnic minority groups, and about 80 percent of participants are from groups that are currently underrepresented in biomedical research, putting the program well on its way to fulfilling one of its more ambitious goals, which is to enroll a substantial portion of participants from groups that have been traditionally underserved in research.

Lunn also noted that All of Us now has more than 100 partners, including academic institutions, the US Department of Veterans Affairs, technology companies, and partners in various communities. He also said that the program has established an efficient 24-hour shipping process for biosamples to and from its biobank at the Mayo Clinic.

Importantly, All of Us has established a timeline for the release of data generated through the program. Through the publicly accessible data browser, researchers can get data snapshots of the existing participant cohort, including race, gender identity, age, and geographical distribution. There's also an interactive data browser that people can use to look at the makeup of the cohort in greater detail, and search for specific terms from the electronic health records and survey answers provided by the participants.

This spring, the NIH is also planning a beta launch of what it's calling the Researcher Workbench — the first version of the All of Us dataset, accompanied by a set of custom-built researcher tools in a cloud-based environment. Users will need to sign a data user agreement to access the site. The dataset will include survey data, measurement data, and detailed electronic health records.

Later in the year, the dataset will be expanded with additional survey, measurement, and health record data, and the NIH will start to release genotyping and whole-genome sequencing data. The program will also start to return results to participants.

Beyond that, Lunn said, All of Us is expected to reach its 1 million-participant threshold in the next five to seven years, and will continue to expand the dataset and Researcher Workbench toolset in 2021 and beyond with additional genomic data, wearables data, new surveys, assays data, and links to external data sources.

"The goal is that this will be the largest and richest biomedical dataset ever collected," Lunn said. "This is more than just a data resource. It's an ecosystem" that includes data analysis tools and participant outreach.