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NIH launches long-term research program, seeks input from general public

May 24, 2018

Bethesda, Md. — Enrollment began in May for a National Institutes of Health long-term research program that aims to be “the largest and most diverse longitudinal health research program ever developed.”

Developers of the program, dubbed All of Us, hope to recruit one million or more U.S. residents into the program to share health information for use by researchers, according to the website, JoinAllOfUs.org.

Participants will be asked to share health and lifestyle information through online surveys and electronic health records collected through the duration of the program, 10 years and perhaps longer, though participants can withdraw at any time.

All researchers, including those doing dental research, will be able to access data from the research portal once it launches, which is expected in 2019, according to the program website. Some of the data will be publicly available, but some will require researchers to explain what they plan to do and study with it. They will be required to go through ethics training and follow a data use agreement and code of conduct to protect patient privacy.

The ultimate goal of the program is to help researchers develop tools and discoveries in precision medicine, or health care based on the individual.

The program seeks participants who are 18 and older, healthy or sick, and are able to consent on their own. It is expected to expand to children in the future.

For more information about the program, visit JoinAllOfUs.org.