OneFlorida working to ensure that clinical research includes all of us

OneFlorida partners working with the national All of Us Research Program are helping to change the face of health care research by enrolling people who were often left out of clinical studies in the past. 

“We’re really excited about the progress we made in our diversity recruiting efforts during our first year,” said Brittney Roth, clinical research manager for OneFlorida and UF project manager for All of Us, a research initiative launched by the National Institutes of Health (NIH) in 2018 to gather health data over time from more than 1 million people living in the United States.

Data collected from All of Us will be used for clinical research, with the goal of speeding the time it takes for research findings to be implemented in clinical practice. The data will also lead to improvements in precision medicine, which enables clinicians to tailor medical care to the individual.

Increasing the diversity of participants in clinical studies is one of the main program objectives of All of Us. In the Aug. 15 New England Journal of Medicine, All of Us research investigators pointed out that a lack of diversity among research participants in clinical studies tends to limit the usefulness of study findings and recommendations. Medical treatments based on studies involving only men, for example, may not be effective for women. Likewise, people of different ages, races, and ethnicities may react differently to a particular drug therapy, surgery or other treatment.

The All of Us recruiting site at UF met or exceeded all of its diversity recruiting goals during the program’s first enrollment year. Among the 1,842 people from North Central Florida enrolled in All of Us from April 2018 through July 2019, 60% were from demographic groups that are underrepresented in biomedical research. This includes women, seniors aged 65 or older, people living in rural areas, and racial and ethnic minority groups, such as Hispanic, Latino and Black or African-American residents. Certain income and education demographic groups historically have been underrepresented, as well.

Roth said 62% of All of Us enrollees at the UF Health site were women, which exceeded the team’s first-year recruitment goal of 60%. Forty percent of enrollees were aged 65 or older—twice as many as the first-year goal of 20%. Another 25% of enrollees were from a minority racial or ethnic group.

Nationally, 51% of the 175,000 core participants initially enrolled in All of Us were from minority groups and 80% were from demographic groups that are underrepresented in biomedical research.

Developing a more diverse database of study participants for research—one that more closely mirrors the diversity of the U.S. population—also helps scientists and clinicians understand and address many health disparities that exist today.  

For example, racial and ethnic minorities in the U.S. develop chronic health conditions such as heart disease, hypertension and diabetes at higher rates than whites. Minorities also experience disproportionately higher rates of disease burdens from cancer, premature death and infant mortality compared to whites.

UF Health serves as one of 340 recruitment sites nationwide for All of Us. In addition to enrolling about 3,000 participants per year in North Central Florida, UF serves as the data collection center for the research program’s SouthEast Enrollment Center (SEEC). The enrollment center, which includes the University of Miami Miller School of Medicine, UF Health, Emory University and the Morehouse School of Medicine in Atlanta, is responsible for All of Us enrollment in Florida and Georgia. Together, the institutions in the SouthEast Enrollment Center enable some of the most diverse populations in the country to participate in All of Us.

Participants receive a $25 gift card for completing the enrollment process and may choose to have their genetic results returned to them by the program. Participation is open to all adults ages 18 and older.

To learn more about All of Us or enroll in the program, please contact the UF Health study team at (855) 698-0692 or allofus-UF@ufl.edu,  or visit All of Us.

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