NIH All of Us Research Program Takes Off May 6

Francis Collins to launch national enrollment at NYC launch event

On May 6, the National Institutes of Health will open national enrollment for the All of Us Research Program—a momentous effort to advance individualized prevention, treatment, and care for people of all backgrounds. A consortium that includes Columbia University Irving Medical Center, Weill Cornell Medicine, NYC Health + Hospitals/Harlem, and NewYork-Presbyterian is spearheading enrollment in New York City. People ages 18 and older, regardless of health status, will be able to enroll. The official launch date will be marked in New York City at Abyssinian Baptist Church in Harlem with a community health fair, speaker's program, as well as an online event.

(Visit Facebook for details about the NYC event.)

Volunteers will join more than 25,000 participants across the United States who have already enrolled in All of Us as part of a year-long beta test to prepare for the program’s national launch. The overall aim is to enroll 1 million or more volunteers and oversample communities that have been underrepresented in research to make the program the largest, most diverse resource of its kind.

 

“The time is now to transform how we conduct research—with participants as partners—to shed new light on how to stay healthy and manage disease in more personalized ways. This is what we can accomplish through All of Us,” said NIH Director Francis S. Collins, MD, PhD.

Precision medicine is an emerging approach to disease treatment and prevention that considers differences in people’s lifestyles, environments. and biological makeup, including genes. By partnering with 1 million diverse people who share information about themselves over many years, the All of Us Research Program will enable research to more precisely prevent and treat a variety of health conditions.

“All of us are unique, but today we live mostly in an era of ‘one-size-fits-all’ medicine,” said Eric Dishman, director of the All of Us Research Program. “I’m alive today because of precision medicine and I think everyone deserves that same opportunity no matter the color of your skin, your economic status, your age or your sex or gender. In other words, it will truly take all of us.”

All of Us seeks to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals, and responsible return of research information. Participants will be able to access their own health information, summary data about the entire participant community, and information about studies and findings that come from All of Us.

 

“The All of Us Research Program marks an amazing opportunity to bring together the communities we serve and our research community to advance health,” said David Goldstein, PhD, NYC Consortium principal investigator and the John E. Borne Professor of Medical and Surgical Research in Genetics and Development and director of the Institute for Genomic Medicine at Columbia University Vagelos College of Physicians and Surgeons. “This bold program will work with our communities to make sure not only that the promise of precision medicine is realized but that it is done so in partnership with the community."

Participants are asked to share different types of health and lifestyle information, including through online surveys and electronic health records (EHRs), which will continue to be collected over the course of the program. At different times over the coming months and years, some participants will be asked to visit a local partner site to provide blood and urine samples and to have basic physical measurements taken, such as height and weight. To ensure that the program gathers information from all types of people, especially those who have been underrepresented in research, not everyone will be asked to give physical measures and samples. In the future, participants may be invited to share data through wearable devices and to join follow-up research studies, including clinical trials.

“At Weill Cornell Medicine, we are dedicated to translating our groundbreaking biomedical discoveries into the most advanced care for our patients and the community,” said All of Us Research Program New York Consortium co-principal investigators Rainu Kaushal, MD, the Nanette Laitman Distinguished Professor and chair of the Department of Healthcare Policy and Research at Weill Cornell Medicine, and M. Elizabeth Ross, MD, PhD, the Nathan Cummings Professor in Neurology and director of the Center for Neurogenetics in the Feil Family Brain and Mind Research Institute at Weill Cornell Medicine. "We are grateful to the NIH for its bold and visionary leadership in precision medicine, and excited to embark on this important project."

“NYC Health + Hospitals/Harlem provides essential care to our community in Harlem. Many of our patients suffer from chronic diseases in higher numbers than other populations,” said Rhonda Trousdale, principal investigator at NYC Health + Hospitals/Harlem and division chief of endocrinology. “We hope that the All of Us Research Program will harness the power of precision medicine to provide future generations with a path to health.”

“NewYork-Presbyterian looks forward to offering our patients and the communities we serve the opportunity to participate in this groundbreaking research, which we believe will lead to significant advances in clinical care,” said David Alge, senior vice president, Community and Population Health at NewYork-Presbyterian. “As an academic medical center serving one of the most diverse populations in the U.S., we welcome the opportunity to collaborate with the NIH and our affiliated academic medical schools, Columbia and Weill Cornell Medicine, on this historic research program to advance precision medicine.”

Also in future phases of the program, children will be able to enroll, and the program will add more data types, such as genetic data. In addition, data from the program will be broadly accessible for research purposes. Ultimately, the All of Us Research program will be a rich and open data resource for traditional academic researchers as well as citizen scientists—and everyone in between.

NIH has funded more than 100 organizations throughout the United States to be partners in the program, including the NYC Consortium. Columbia University Irving Medical Center, Weill Cornell Medicine, NYC Health + Hospitals/Harlem and NewYork-Presbyterian are leading enrollment efforts in the New York City area and will partner with participants over the long term to facilitate return of results and identify research questions that may be desired by the community.

On the program’s May 6 launch date, the All of Us Research Program will host special events in diverse communities around the country.

NIH Director Dr. Collins will officially launch the program at the New York City event at Abyssinian Baptist Church. The NYC Consortium will host a free, family-friendly community event on Sunday, May 6 from 1 p.m. to 5 p.m. at Abyssinian and will feature health screenings, interactive health demos, entertainment, music, healthy food, and more. Attendees can begin the enrollment process at the event.

People also may take part in social media activities (#JoinAllofUs), visit the All of Us Facebook page, or tune in at https://Launch.JoinAllofUS.org to watch speakers across the country talk about precision medicine and the power of volunteering for research.

References

To learn more about the program and how to join, please visit https://www.JoinAllofUs.org.

“All of Us” is a registered service mark of the U.S. Department of Health & Human Services (HHS).