On Sunday, the National Institutes of Health opened national enrollment for the All of Us Research Program—a momentous effort to advance individualized prevention, treatment and care for people of all backgrounds—in collaboration with Essentia Health and other partners.
People ages 18 and older, regardless of health status, are able to enroll. Precision medicine is an emerging approach to disease treatment and prevention that considers differences in people’s lifestyles, environments and biological makeup, including genes. By partnering with 1 million diverse people who share information about themselves over many years, the All of Us Research Program will enable research to more precisely prevent and treat a variety of health conditions.
Volunteers will join more than 25,000 participants across the United States who have already enrolled in All of Us as part of a year-long beta test to prepare for the program’s national launch. The overall aim is to enroll 1 million or more volunteers and oversample communities that have been underrepresented in research to make the program the largest, most diverse resource of its kind.
“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. This is what we can accomplish through All of Us,” said NIH Director Francis S. Collins, M.D., Ph.D.
“All of us are unique, but today we live mostly in an era of ‘one-size-fits-all’ medicine,” said Eric Dishman, director of the All of Us Research Program. “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.”
All of Us seeks to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals and responsible return of research information. Participants will be able to access their own health information, summary data about the entire participant community and information about studies and findings that come from All of Us.
“Precision medicine is already taking place today as we tailor treatments to individuals. The All of Us Research Program will gather a large, genetically diverse population that’s a representative sample of the U.S.,” explains Steve Waring, a researcher at the Essentia Institute of Rural Health (EIRH) and Essentia’s principal investigator for the program.
EIRH will receive a $7.5 million grant to conduct the study. Its goals are to lay the foundation for precision medicine, identify new ways to treat and prevent disease, test whether mobile devices can encourage healthy behaviors and help develop the right drug for the right person at the right dose.
Participants are asked to share different types of health and lifestyle information, including online surveys and electronic health records (EHRs), which will continue to be collected over the course of the program. At different times over the coming months and years, some participants will be asked to visit a local partner site to provide blood and urine samples and to have basic physical measurements taken, such as height and weight.
To ensure that the program gathers information from all types of people, especially those who have been underrepresented in research, not everyone will be asked to give physical measures and samples. In the future, participants may be invited to share data through wearable devices and to join follow-up research studies, including clinical trials.
Also in future phases of the program, children will be able to enroll, and the program will add more data types, such as genetic data. In addition, data from the program will be broadly accessible for research purposes. Ultimately, the All of Us Research program will be a rich and open data resource for traditional academic researchers as well as citizen scientists—and everyone in between.