Special Update: The All of Us Research Program National Launch
The All of Us Research Program, which began national enrollment on May 6, is a historic effort to gather data from 1 million or more people living in the United States to advance individualized prevention, treatment, and care for people of all backgrounds. Supported by the National Institutes of Health (NIH), All of Us is expected to be the largest and most diverse longitudinal health research program ever developed.
Participants who join will share information about their health, environment, and lifestyle over time. Researchers will have broad access to study this data, and knowledge gained from this research could help investigators improve health for generations to come. All of Us expects to launch the research portal in early 2019, when there is enough data for initial research to be conducted.
To protect participant data and ensure ethical use, All of Us is employing state-of-the-art security technology and following strict security protocols and processes. The program will remove obvious identifiers, encrypt the data, and store it on a secure platform. Researchers seeking access to the data will be required to register with the program and verify their identity, take ethics training, and agree to a code of conduct for responsible data use. The program will track the activity of all researchers who use the data to look for violations of these policies. Furthermore, the name, affiliation, and research purpose of each researcher will be made public.
All of Us offers many opportunities to advance prevention research. With a cohort of more than 1 million people, reflecting the diversity of the U.S. population, the program will provide a rich resource for identifying risk and protective factors for a wide range of diseases, disorders, injuries, and disabilities, including many that are too rare to be examined in smaller studies.
All of Us already has an impressive foundation of volunteers, infrastructure, and data. It will offer a valuable public resource for recruiting participants to clinical trials that evaluate the effectiveness of a wide range of preventive interventions. This will give researchers the ability to select individuals for recruitment to clinical trials based on their individual characteristics and the needs of each trial.
Since All of Us data will be broadly accessible to researchers of all kinds, the research program will improve the efficiency of many prevention research projects by providing baseline and follow-up information to researchers all in one place.
The Office of Disease Prevention (ODP) has been involved in the All of Us Research Program from the very beginning. I’ve served on some of the earliest working groups to help plan the study, and since early 2016, I have served as the NIH representative to the Institutional Review Board responsible for the ethics review of All of Us research materials and protocols. Other ODP staff have served on a variety of working groups or as members of the All of Us staff while on detail from the ODP.
We are excited to continue supporting this initiative and to see the progress that all of us will make together. To learn more about this important new research project, please visit the All of Us Research Program website.
David M. Murray, Ph.D.
Associate Director for Prevention
Director of the Office of Disease Prevention