NIH wants ‘real people, real participants’ for precision medicine data program

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The National Institutes of Health launched the pilot of a precision medicine program this week with the hopes of gathering genetic and health data on 1 million or more Americans to advance medical research.

NIH began enrolling the first beta testers in its All of Us research program, which aims to use the data from participants to “gain better insights into the biological, environmental, and behavioral influences on these diseases to make a difference for the millions of people who suffer from them” while also accounting for individual differences in lifestyle, environment, and biology.

That means “real people, real participants with our real protocol going through everything,” All of Us program director Eric Dishman said in a video he recorded to make the announcement. “This has been a long time coming, and it’s a huge milestone and accomplishment.”

The program will start with a single site in the beta — a “‘Version 1.0’ of a major software and protocol release” if you will — but the plan is to expand that to more than 100 before full launch, enrolling a few participants per day and gradually inviting more and more — “eventually totaling at least 10,000 people across the country,”Dishman wrote in an online statement.

“Our beta testers will help us find problems with our systems and processes, so we can fix them and improve the experience for everyone going forward,” he wrote. “And most importantly, they will help us evaluate and improve our messaging, our engagement approaches, and our relationship building with diverse communities across the country.”

Along with the beta, the team launched a website for Americans to enroll, joinallofus.org, for future participation. But for now, the beta is controlled, meaning only recruited participants can take part.

When the beta is over, Dishman said NIH will take a “collective pause” to reassess where the program and its systems stand in their readiness for a full launch. If all goes accordingly, that full launch should occur later this fall or early next year, Dishman said, while urging that the program will launch when it’s “ready and right.”

“By providing information about their health, lifestyles, and environments over the course of many decades, these volunteers will be important partners in helping create an unprecedented research resource to drive future discoveries,” he said. “This resource will be easily accessible to researchers of all kinds, from citizen scientists to investigators in academia and industry, for studies on a variety of health topics.”

Find out more about the beta in Dishman’s recorded video below:

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big data, genetics, health, National Institutes of Health, NIH, Precision Medicine, research, Science