NIH gives first look at All of Us precision medicine research health database

DNA genomics precision medicine
The NIH has released a preview of the online database containing health data from All of US precision medicine research participants. (Pixabay)

When the National Institutes of Health announced the All of Us initiative in 2015, it kicked off the largest health and medical research program on precision medicine with the goal of collecting health data on 1 million people. 

To date, more than 192,000 people have enrolled, including more than 143,000 participants who have completed all of the initial steps of the program. The NIH announced on Monday the beta release of its interactive data browser to provide a preview of the data that study participants are sharing for health research.

NIH is making the online database available to enable participants, researchers and other members of the public to learn more about the All of Us participant community and explore summary data, NIH officials said. Later, researchers will be able to request access to the data for use in a wide range of studies that may lead to more customized ways to prevent and treat disease.

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"Our participants have helped build this program from the ground up, and we’re eager for them to see what they’re contributing to and how their information fits into a larger whole,” All of Us Director Eric Dishman said in a statement. Researchers can now see the breadth and depth of data the program has begun gathering and consider its possibilities for their work, Dishman said.

The program opened enrollment nationwide in May 2018 after an extensive period of beta testing. More than 100,000 people have completed all of the initial steps of the program—answering the first three surveys, agreeing to share electronic health records (EHRs), having their physical measurements taken and providing blood and urine samples for whole genome sequencing and other analyses.

RELATED: NIH’s Eric Dishman: EHR access is a ‘fundamental’ pillar of precision medicine research

Of these participants, 80% represent communities that are historically underrepresented in research, including 51% from racial and ethnic minority groups. Participants hail from all 50 states, NIH officials said.

“Our goal is that the data browser will help researchers from around the world begin to understand how they will be able to use All of Us to discover new insights into the effect of lifestyle, environment, and biology on health and disease,” said Josh Denny, M.D. principal investigator of the All of Us Data and Research Center and professor of biomedical informatics and medicine at Vanderbilt University Medical Center. “The resource will grow richer over time as more participants join and we add new data types, from digital health data to whole genome sequences.”

In its initial release, the database features a curated set of information from surveys, physical measurements and EHR data including information about health conditions, procedures, medications and health care visits.

In time, the program seeks to expand the information in the data browser and offer more detailed breakdowns of data by various categories, such as race and ethnicity and gender identity. These enhancements may help advance research on health disparities, NIH officials said.

RELATED: NIH: All of Us precision medicine project finally ready for prime time

To safeguard participant privacy, All of Us stores the participant data on a secure, encrypted platform that receives routine updates. The program strips data of personal identifiers, such as names and addresses, and displays information only in aggregated groups. The public data browser also limits cross tabulation, or analyses of data using two or more variables such as age and sex.

This winter, the program plans to launch a new tool called the researcher workbench, making its initial set of data available for in-depth analysis. Researchers seeking access will need to register, complete All of Us researcher ethics training and sign a data use agreement.

“The data browser is the start of much more to come,” said Dishman. “We look forward to hearing input from the community as we roll out the initial version of this tool and expand data access over time, in our efforts to speed up research and medical breakthroughs.”

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