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All of Us study to gather data from a million Americans

From NIDA.


Million-Participant NIH Study Could Yield Important Insights into Addiction and Pain

We are on the verge of a new era in medicine, one that truly treats the patient as an individual and as a participant in their own care. New data-gathering and analytic capabilities are enabling the kinds of massive, long-term studies needed to investigate genetic, environmental, and lifestyle factors that contribute to disease. Fine-grained insight into prevention and treatment is creating a truly precision, individualized form of medicine, the payoffs of which are already striking in such areas as cancer treatment.

This past weekend, the NIH Precision Medicine Initiative launched All of Us, a massive study that will gather data from a million Americans across all demographic, regional, and health/illness spectrums. It will use electronic health records to track the health and medical care received by participants for a decade or more, incorporating surveys, blood and urine samples, and even data from fitness trackers or other wearable devices. For the time being, recruitment is limited to those 18 or older, but future stages will include children as well. The data will be open-access for researchers—and of course, anonymous.

The All of Us study will benefit addiction science in many ways, for instance by yielding valuable data on the influence of substance use and substance use disorders on various medical conditions. Information on use of alcohol, tobacco, opioids, and perhaps other substances is liable to be captured in the electronic health records used for this study, and surveys will also capture lifestyle-related information including substance use and misuse. Gathering these records and survey data over time will provide important insight into how common forms of substance use affect treatment outcomes for a range of common diseases—heart disease, cancers, and so on. It could yield valuable insights into genetic risk factors for substance use and substance use disorders as well as predictors of responsiveness to treatment using different medications. Links between substance use, substance use disorders, and other psychiatric problems such as depression and suicide can also be explored with such a large sample.

Factors affecting pain and its treatment are also directly relevant to addiction, especially in the context of the current opioid crisis. All of Us could provide valuable data on demographic variations in pain prescribing, telling us what groups (ethnicities, ages, genders) are being prescribed opioids as opposed to other medications or non-pharmacological treatments, and tell researchers how these treatments affect patients’ lives. This data set will help answer questions about the role opioid treatments may play in the transition from acute to chronic pain, for instance, and what role opioid treatment plays in development of opioid use disorders or other substance use disorders. It will also help us understand what other factors, such as mental health or other comorbidities, affect trajectories associated with pain.

Like the ABCD study currently underway to study adolescent brain development, the All of Us study is deliberately open-ended. It is understood that rapidly advancing technology will give us the ability not only to answer new questions but also ask questions that might not even occur to researchers currently. Consequently, All of Us is being designed to allow the ingenuity of the research community to explore how this dataset can be utilized and design new ways of making it address their specific research questions.

People interested in being part of in this bold study can learn more and even sign up to participate online. The Director of Science Programs for All of Us, Joni Rutter, who was formerly the director of NIDA’s Division of Neuroscience and Behavior Research, notes that the scope of the study is designed to engage people from all walks of life, including groups that have been underrepresented in biomedical research in the past: “The diversity of the participants, combined with the geographic diversity—the diversity of the data types, is really unprecedented and will be the foundation of a strong national enterprise for precision medicine research.” (see video below)


Original blog.