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Local

Geneva-based All of Us research program seeks 1M people to share medical data

Participant site available at Delnor Hospital in Geneva

Pam Bolyanatz, a nurse practitioner at the Northwestern Medicine Delnor Hospital Pain Clinic, signs up for the All of Us Research Program at the new Delnor Hospital participant office.
Pam Bolyanatz, a nurse practitioner at the Northwestern Medicine Delnor Hospital Pain Clinic, signs up for the All of Us Research Program at the new Delnor Hospital participant office.

GENEVA – The National Institutes of Health has begun an All of Us Research Program, seeking 1 million people to share health information for researchers to conduct thousands of health studies, officials announced in a news release.

Northwestern Medicine, University of Illinois at Chicago, University of Chicago, Rush University Medical Center and NorthShore University HealthSystem make up the Illinois Precision Medicine Consortium, which seeks to enroll at least 150,000 participants across 4 1/2 years.

The goal of All of Us is to advance individualized prevention, treatment and care for people of all backgrounds by gathering the largest, most diverse biomedical data resource in history, the release stated.

To facilitate the enrollment, a new participant center is now open at 302 Randall Road, Suite 209 on the campus of Northwestern Medicine Delnor Hospital in Geneva.

Pam Bolyanatz, a nurse practitioner in the Pain Clinic at Delnor, was the first person to sign up at the Delnor office.

“I’m a new grandmother and anything I can do to help the next generation, I want to be a part of,” Bolyanatz said. “I’ve been a nurse for 40 years. I am interested in anything that can advance our knowledge of disease and prevention of disease and treatment of disease.”

People ages 18 and older can enroll, regardless of health status.

Bolyanatz said it took longer to fill out the paperwork of her health history than the 15 minutes it took for blood and urine samples and measurements of her height, weight, blood pressure and temperature.

“We might not have answers about a certain disease today, but we certainly need it for the next generation,” Bolyanatz said.“I almost get tears in my eyes to think about what this collective volume of information may do for my grandchildren.”

Participants can share different types of health and lifestyle information – including through online surveys and electronic health records – which will continue to be collected over the course of the program.

“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,” Dr. Philip Greenland stated in the release.

Greenland is the primary investigator for Northwestern Medicine, the lead site for the Illinois Precision Medicine Consortium, the release stated.

“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,” Greenland stated in the release.

The National Institutes of Health awarded $51 million to build the foundational partnerships and infrastructure needed to launch the Cohort Program of President Obama’s Precision Medicine Initiative – now called All of Us, according to the Northwestern Medicine website, news.feinberg.northwestern.edu.

NIH funded more than 100 organizations throughout the U.S. to be partners in the program. 

The Data and Research Support Center — awarded to Vanderbilt University Medical Center, and working with the Broad Institute and Verily Life Sciences — will acquire, organize and provide secure access to what will be one of the world’s largest and most diverse datasets for precision medicine research.

In the future, participants may be invited to share data through wearable devices and to join followup research studies, including clinical trials.

In future phases of the program, children will be able to enroll, and the program will add more data types, such as genetic data.

Ultimately, the All of Us research program will be an open data resource for traditional academic researchers as well as citizen scientists—and everyone in between, according to the news release.

More information about the program and how to join is available online by visiting nm.org/joinallofus.

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