Precision medicine effort strengthens its platform for groundbreaking discoveries
The National Institutes of Health’s All of Us Research Program has expanded its data available for research to now include data from more than 633,000 participants – a 50% increase from the previous release. Additionally, the program has increased its genomic dataset by nearly 70% and quadrupled the number of participants with Fitbit wearable data. These updates enhance the program's vast and comprehensive dataset, one of the largest globally, to enable discoveries that will advance our understanding of health and disease.
“The All of Us dataset helps tell the stories of our participants’ lives. With each update, participants are giving researchers new insights to understand how our experiences, genetics, and clinical care shape our health over time,” said Josh Denny, M.D., M.S., chief executive officer of the All of Us Research Program at NIH. “The data will help redefine precision medicine for generations to come.”
The refreshed dataset includes several notable updates:
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The program’s genomic dataset has grown by nearly 70% to include whole genome sequences from more than 414,000 participants. Within this extensive collection, the program has identified more than 1.2 billion genetic variants, including more than 200 million previously unreported genetic variants. These data are being used by researchers and clinicians to advance understanding of common and rare diseases. Additionally, the program has increased the number of long-read sequences available to more than 2,700.
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The number of people with Fitbit data has quadrupled to now include information from nearly 60,000 participants. This is the largest public dataset of wearable device information available, with some records extending back more than a decade. The surge in data follows the success of the program’s Wearables Enhancing All of Us Research (WEAR) study, which provided Fitbit devices to participants who identify with communities underrepresented in medical research.
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Data from participants who self-identify as American Indian or Alaska Native (AI/AN) are now available on the Researcher Workbench. Following in-depth engagement with Tribal leaders and community members, the program has incorporated data from participants who self-identify as AI/AN. As part of its commitment to uphold Tribal sovereignty, the program does not allow recruitment or engagement in Tribal jurisdictions. Self-identified AI/AN participants joined the program online or through enrollment centers outside of Tribal jurisdictions.
Prior to this release, the program held a series of information sessions and three Tribal consultations. Additionally, All of Us updated data use guidance, policies, and trainings to help researchers use the data responsibly. The program has also added more Indigenous voices to its governance, including its Resource Access Board, the group that reviews projects to prevent harmful research. Read more about how the program is helping to ensure responsible use of data from participants who self-identify as AI/AN.
All of Us data are available on the cloud-based Researcher Workbench, the program’s analysis platform for registered researchers. This secure system has tools and resources available to researchers to explore the data, as well as featured workspaces that show researchers ways to segment and analyze the data, to help kickstart their work. Together, the data and tools available on the Researcher Workbench can accelerate projects and reduce the resources needed by researchers.
Enrollment in All of Us continues nationwide, currently with more than 849,000 participants across the United States and its territories. The program regularly updates its Researcher Workbench data as it is contributed by participants and curated to align with the program’s data protection safeguards. This continual growth maximizes opportunities for research and exploration of the data. Later this year, the program plans to share new data and survey responses from participants on emotional health and well-being, behavioral health, and personality.
All of Us enables research on a broad range scientific topics. The Researcher Workbench currently powers more than 15,000 studies. In total, more than 15,000 researchers from all 50 states and more than 1,000 organizations worldwide are registered to use the Researcher Workbench.
For more information on the All of Us dataset, or to register to use this resource, go to ResearchAllofUs.org.
