Chicago’s leading medical centers join the NIH for launch of the All of Us Research Program to advance precision medicine
Northwestern Memorial Hospital May 01, 2018
CHICAGO – On May 6, the National Institutes of Health (NIH) 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. To mark the occasion, the Illinois Precision Medicine Consortium will host a Chicago launch event on Sunday, May 6 from 11 a.m. to 5 p.m. at Millennium Park’s Chase Promenade South in Chicago. Community members are invited to learn about All of Us through a variety of engaging activities and speakers as well as register as participants in the program. The Chicago event is one of many simultaneous events being held around the around the country to mark the program’s launch. NIH will also host an online program which will be simulcast at the Chicago event.
The Illinois Precision Medicine Consortium includes Northwestern Medicine, University of Illinois at Chicago, University of Chicago, Rush University Medical Center, and NorthShore University HealthSystem. The consortium received a five-year, $51 million grant to help launch landmark longitudinal research effort central to the Precision Medicine Initiative from NIH. All of Us will gather lifestyle and medical data from people across the United States to provide the most diverse biomedical data resource in history. NIH funded more than 100 organizations throughout the U.S. to be partners in the program.
At the launch event in Millennium Park, attendees will have the opportunity to register to join the All of Us Research Program. People ages 18 and older can enroll, regardless of health status. Other activities at the event include a community education fair from 11 a.m. to 5 p.m. with health and wellness information, a free Zumba class at 1 p.m. and a performance from the Northwestern Medical Orchestra and other groups throughout the day. Starting at 3 p.m., attendees can view the national launch event via simulcast and the local speakers program will start at 3:30 p.m. with Zoraida Sambolin of NBC 5 Chicago News serving as the emcee. Speakers include:
• Veronica Robinson, executive director of Henrietta Lacks HeLa
• Candace Henley, chief surviving officer of the Blue Hat Foundation
• Elizabeth Rivera, local author/educator
• Michelle Birkett, director of the CONNECT Research Program in Complex Systems and Health Disparities at Northwestern University
• Jeannine Donahue, OncoSET coordinator at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and executive coordinator at Inflammatory Breast Cancer International Consortium
Volunteers who register 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.
“Data from the program has the potential to make an impact for generations to come by enabling researchers to gain better insights into how our individual differences in environment, biology, genetics and lifestyle can affect our health,” said said Philip Greenland, MD, primary investigator Northwestern Medicine, the lead site for the Illinois Precision Medicine Consortium. “All of Us may help in the future with personalized prevention, treatment and management options based on themes found from the data that every participant offers.”
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.
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.
To learn more about the All of Us program and how to join, please visit https://JoinAllofUs.org.
“All of Us” is a registered service mark of the U.S. Department of Health & Human Services (HHS).