All of Us Study at Miller School Launches National Research Database

The National Institutes of Health’s All of Us Research Program — for which the University of Miami Miller School of Medicine is a partner site and leads the SouthEast Enrollment Center (SEEC) — has launched its Researcher Workbench Database.

The All of Us Research Program enables traditional and nontraditional researchers to learn from a community of one million or more participants. The program’s large, diverse, and broadly accessible data resource can help accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care. The goal of the program is to help researchers understand more about why people get sick or stay healthy. By looking for patterns, researchers may learn more about what affects people’s health.

Now open and ready for use, the Workbench Database is a major milestone for the All of Us Research Program. A data-use agreement between the Miller School and NIH opens the Researcher Workbench to investigators across the University of Miami. The Researcher Workbench is an unprecedented rich data resource that allows researchers access to raw and curated data in order to save time and resources as well as accelerate research breakthroughs.

The Workbench also allows traditional scientists the opportunity to investigate how to reduce health disparities and improve health equity in populations that are historically underrepresented in biomedical research. The database can support multidisciplinary research on many aspects of biomedical research, not just a single medical or biological research question. Users can dive into aggregate data, including survey responses, physical measurements, and electronic health record information from nearly 225,000 participants from the All of Us Research Program.

Stephan Züchner, M.D., Ph.D., is the lead principal investigator for the All of Us Research Program’s SEEC. He hopes the diverse dataset offered within the All of Us Researcher Workbench will facilitate studies that may lead to new insights, treatments, and strategies for disease prevention that are unique to individuals.

“All of Us is unique because we are enrolling one million or more people from different backgrounds, ages, races, ethnicities, and regions of the country,” said Dr. Züchner, who also chairs UM’s Dr. John T. Macdonald Foundation Department of Human Genetics and co-directs the John P. Hussman Institute for Human Genomics. “They are also diverse in gender identity, sexual orientation, and health status. The diverse representation in All of Us means researchers will have a chance to truly learn and study what makes each one of us unique.”

Jacob McCauley, Ph.D., associate professor of human genetics and pathology, and director of the John P. Hussman Institute for Human Genomics Center for Genome Technology, says the early version of the Researcher Workbench now available for use gives scientists a glimpse at an unprecedented sampling of the country’s population.

Of those included so far in the Workbench:

• 75% are from communities recognized as having been historically underrepresented in biomedical research
• More than 45% come from diverse races and ethnicities
• Nearly 10,000 were enrolled at the University of Miami over the past 30 months

Bringing value to researchers and participants

Rosario Isasi, J.D., M.P.H., associate professor of human genetics at the Miller School of Medicine, says the Workbench is not only a valuable tool for researchers, but also for study participants.

“The goal of the Workbench is to return value to participants as their altruistic contributions will enable scientific discoveries which will ultimately benefit society,” said Isasi, who also serves as co-investigator supporting ethics/regulatory aspects of All of Us and co-chair of the All of Us Committee on Access, Privacy, and Security as well as its Resource Access Board.

UM All of Us leaders say the Researcher Workbench could have value right away for scientists hoping to understand more about current-day challenges, like COVID-19.

“With the vast array of research collected already, the Workbench can help with looking for patterns of infection and virus evolution as well as aid in identifying better diagnostics and treatments,” said Olveen Carrasquillo, M.D., M.P.H., professor of public health sciences and chief of the Division of General Internal Medicine.

Dr. Carrasquillo, a study PI who serves as the SEEC’s participant engagement lead, imagines a future where researchers can examine a dataset like the one offered by Researcher Workbench to evaluate not only clinical data on a virus or disease, but also a person’s genetic make-up, detailed racial and ethnic data, and data on social determinants of health.

Accessing Researcher Workbench

UM researchers can request access to the Researcher Workbench by first creating an online account. To do so, visit the login page, select “Create Account,” and use your University of Miami email account to register.

Researchers who access the early version of Researcher Workbench are asked to provide feedback on usability and ways the data and tools can be improved for future enhancements.

After registering, follow the prompts to connect your eRA Commons Account and complete the All of Us Responsible Conduct of Research training. The final step is to sign the Data User Code of Conduct.

Enroll in All of Us

Enrollment in the All of Us Research Program is ongoing. Study participation is vital to growing the Researcher Workbench database and helping make new health research discoveries. In the past, many groups of people have been left out of research. As a result, we know less about their health and ways to provide them with the best care. All of Us is aiming to change that by ensuring there is adequate representation from communities that have historically been underrepresented in biomedical research. If you decide to enroll in All of Us, you will be joining an unprecedented effort to meet one goal: speed up health research breakthroughs. To join All of Us, visit JoinAllofUs.org/Miami, call (305) 243-8380, or text “research” to 313131.

SEEC is supported under NIH funding award #1OT2OD025285. “All of Us” is a registered service mark of the U.S. Department of Health and Human Services.

Written by InventUM

Published on October 28, 2020