The National Institutes of Health’s (NIH) All of Us Research Program has set the stage to accelerate biomedical and health research. All of Us is among the few population-based longitudinal cohort studies that was intentionally designed to avoid common limitations such as inadequate sample size, lack of diversity among participants, restrictive policies regarding data access, and failure to comprehensively capture genotype and phenotype data.
In her plenary session, on Thursday, December 17 at 9:00 am Central, All of Us Program Director Dr. Anastasia Wise aims to educate attendees about the program’s goals of accelerating health research and biomedical breakthroughs to enable true precision medicine encompassing individualized disease prevention and treatment.
The All of Us Research Program plans to enroll a diverse cohort of at least 1 million individuals in the United States with an emphasis on recruiting persons in demographic categories that have been and continue to be underrepresented in biomedical research. Race, ethnicity, age, sex, gender identity, sexual orientation, disability status, access to care, income, educational attainment, and geographic location are taken into account in an effort to reflect the diversity of America.
Since enrollment opened in May 2018, All of Us is more than one-third of the way to accomplishing its ambitious goal with more than 350,000 participants enrolled to-date. Elements of the program’s protocol include health questionnaires, electronic health records (EHRs), the use of digital health technology, and the collection and analysis of biospecimens including blood, urine, and saliva.
Curious about how to access or contribute to the treasure trove of data associated with All of Us? Interfacing with All of Us as a participant or researcher is straightforward. Participants can enroll through the All of Us website (https://joinallofus.org) and researchers can use a public browser (https://databrowser.researchallofus.org) to explore the data and test hypotheses with the use of Web-based tools and interactive cloud-based computing environments. According to Dr. Wise, All of Us has created a “virtuous cycle where participants’ contributions allow researchers to conduct precision medicine studies, and that research can then be used to learn more about how to tailor care to people’s different needs”.
What can All of Us participants expect? Once a person consents to participate in the All of Us program, provides authorization to share EHR data, and completes an initial baseline survey of demographic information, the person is eligible to undergo an evaluation for physical measurements and biospecimen collection either at a health care provider organization or through a “direct-volunteer” mechanism. Participants have access to their own data and the results of research testing.
Dr. Wise enthusiastically states that All of Us “is a resource that is going to continue to grow over time”. Session attendees are encouraged to contribute to this unique and diverse dataset as All of Us participants or as researchers, although involvement in these two capacities is certainly not mutually exclusive. All of Us wants all of you to get involved!