The All of Us Research Program officially opens for enrollment Sunday, May 6. Led by the National Institutes of Health (NIH), All of Us is an unprecedented effort to gather genetic, biological, environmental, health and lifestyle data from 1 million or more volunteer participants living in the United States. A major component of the federal Precision Medicine Initiative, the program’s ultimate goal is to accelerate research and improve health.
Unlike research studies that are focused on a specific disease or population, All of Us will serve as a national research resource to inform thousands of studies, covering a wide variety of health conditions. Researchers will be able to access data from the program to learn more about how individual differences in lifestyle, environment and biological makeup can influence health and disease. 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.
In California, the All of Us Research Program is being implemented by the California Precision Medicine Consortium, which is co-led by Lucila Ohno-Machado, MD, PhD, at UC San Diego Health, and Hoda Anton-Culver, PhD, at UC Irvine Health. The consortium also includes UC San Francisco, UC Davis, the Keck School of Medicine of the University of Southern California, and Cedars-Sinai Medical Center.
“We hope Californians will want to join in All of Us to help make history by changing the future of health research and the level of participation by people from all backgrounds ,” said Robert Hiatt, MD, PhD, who leads the program for UCSF Health. Hiatt is a professor of Epidemiology and Biostatistics and associate director of population sciences at the UCSF Helen Diller Family Comprehensive Cancer Center. “We look forward creating a new way that human research is done and to sharing this exciting journey with our many participants.”
Congress has authorized $1.455 billion over 10 years for All of Us. More than 25,000 people nationwide have already joined the program as part of a yearlong beta testing phase that helped shape the participant experience.
“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, MD, PhD.
How to Participate
To learn more about the All of Us Research Program and how to join, please visit JoinAllofUs.org.
Participants, who must be 18 years or older for the program’s initial phase, are asked to share different types of health and lifestyle information, including through online surveys and electronic health records, 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. In San Francisco, that will begin at the All of Us site at the UCSF Medical Center at Mount Zion, but will expand to other sites in the future.
All of Us will begin recruiting in San Francisco from individuals who have received their care at UCSF Health and have a medical record there. In the future there will be opportunities to sign up and participant as a direct volunteer.
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.
Read more at UCSF.edu