Starting Sunday, the National Institutes of Health (NIH) will open public enrollment for the “All of Us” Research Program, an ambitious effort to capture health and lifestyle data from at least one million US adults to better inform healthcare research.
The program “is an opportunity for individuals from all walks of life to be represented in research and pioneer the next era of medicine,” NIH Director Francis S. Collins, MD, PhD, said in a press release. “The time is now to transform how we conduct research — with participants as partners — to shed new light on how to stay healthy and manage disease in more personalized ways.”
All people aged 18 years or older, regardless of health status, will be able to sign up at no cost. Children will be eligible at a later time. The website says the process should take about 18 to 30 minutes.
Several cities will host live events to mark the launch May 6, including Birmingham, Alabama; Chicago, Illinois; Detroit, Michigan; Kansas City, Missouri; New York City, New York; Nashville, Tennessee; and Pasco, Washington. Some events will also be streamed live.
The project asks participants to share health data including health surveys and electronic health records, online, with all identifying information removed. Participants also may be asked to share physical measurements and blood and urine samples. Samples will be stored without names in a secure biobank.
Participants will get information back about their data, which may help them learn more about their health.
The project has been in beta testing for a year, and more than 25,000 volunteers have already joined. Key to its success is gathering information from underserved populations.
Eric Dishman, director of the All of Us program, described the need for participation.
“All of us are unique, but today we live mostly in an era of ‘one-size-fits-all’ medicine,” Dishman said in the press announcement. “I’m alive today because of precision medicine, and I think everyone deserves that same opportunity no matter the color of your skin, your economic status, your age or your sex or gender. In other words, it will truly take all of us.”
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