All of Us Research Program
At a Glance
- Status: Active Consortium
- Year Launched: 2016
- Initiating Organization: Department of Health and Human Services
- Initiator Type: Government
- Disease focus:
- Location: North America
The All of Us Research Program is a historic effort to gather data from one million or more people living in the United States 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. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine. Participants may be able to learn more about their own health and contribute to an effort that may advance the health of generations to come.
By enrolling one million or more volunteers, the All of Us Research Program will have the scale and scope to enable research for a wide range of diseases, both common and rare, as well as increase our understanding of healthy states. Additionally, a research program of this size will have the statistical power to detect associations between environmental and/or biological exposures and a wide variety of health outcomes. Among the scientific opportunities presented by All of Us is the ability to:
- develop ways to measure risk for a range of diseases based on environmental exposures, genetic factors and interactions between the two;
- identify the causes of individual differences in response to commonly used drugs (commonly referred to as pharmacogenomics);
- discover biological markers that signal increased or decreased risk of developing common diseases;
- use mobile health (mHealth) technologies to correlate activity, physiological measures and environmental exposures with health outcomes;
- develop new disease classifications and relationships;
- empower study participants with data and information to improve their own health; and
- create a platform to enable trials of targeted therapies.
President Obama announced the Precision Medicine Research Initiative (later titled All of Us) in 2016, seeking to take a revolutionary approach for disease prevention and treatment that takes into account individual differences in lifestyle, environment, and biology. The initiative is funded for an initial 5 years, with the possibility of more funding made available thereafter.
Structure & Governance
The NIH created two independent advisory groups to oversee and advise on the All of Us Research Program. These groups are the “All of Us Research Program Advisory Panel” and the “PMI working Group of the Advisory Committee to the Director”. Ultimately, the program is administered through the Department of Health and Human Services (HHS).
All of Us (initially known as the Precision Medicine Initiative) is funded by allocating $130 million to the NIH to build a national participation group as well as $70 million to the National Cancer Institute to lead efforts in cancer genomics.
Anyone over the age of 18 who is living in the United States will be able to join the All of Us Research Program, either directly through the JoinAllofUs.org website or through participating health care provider organizations. NIH plans to begin enrolling participants in 2017. Children will be able to join in the future, potentially within the next 1-2 years.
Participants will be asked to contribute information about their medical history and lifestyle. Participants may also be asked to have their physical measurements (blood pressure, height and weight, etc.) taken at a local enrollment center, or donate a blood and urine sample. Participants will have access to their study results, along with summarized data from across the program.
Participants who share their health data with the All of Us program will be given strict and adhered to guarantees regarding anonymity
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