Southeast Enrollment Center Consortium 2 (SEEC-2)

NIH RePORTER · NIH · OT2 · $1,250,000 · view on reporter.nih.gov ↗

Abstract

The All Of Us Research Program (AOURP) is a historic effort to enable 21st century biomedical research that will benefit all persons in the USA. The inclusion of at least 1 million volunteers into one study is not only unprecedented in scale, but also sets new standards in reaching every individual, regardless of race and ethnicity, age, geography, or health status. This will power genetic studies of health and well-being, which will eventually deliver more precise treatments and personalized medications. Already, early examples of this approach are apparent in the form of advanced cancer treatments and genetic therapies. Large and easily accessible datasets are essential to support the research needed for such breakthrough advances. In return, AOURP participants will have access to their genetic data, receive medically relevant personalized feedback, and gain insights into other aspects of their own personal health. A specific strength of the AOURP is the role of Regional Medical Centers (RMC), which provide their experienced staff and faculty, their resources, and their trusted relationships with patients and communities, to engage, enroll, and retain participants for the AOURP study. We have formed a consortium of such RMCs in the States of Florida, Georgia, and the Territory of Puerto Rico. We call this the SouthEast Enrollment Center (SEEC-2), led by University of Miami, University of Florida Gainesville, Morehouse School of Medicine, Emory University, and the University of Puerto Rico Comprehensive Cancer Center. These five prestigious academic regional medical centers are further allied with several public and private hospital systems and are working with dozens of regional partner organization to allow every individual in this geographic area access to the AOURP. Over the past five years, the SEEC team has registered more than 51,000 individuals and fully enrolled nearly 40,000 core participants into the AOURP study. At a closer look, these participants truly represent the diversity of people living in this region. More than 67% identify with a race or ethnicity that is historically not well represented in medical research studies, thus potentially missing out on the benefits of new treatments. Approximately 25% are of older age, and 18% have disabilities; together 93% of SEEC participants belong to the category of Underrepresented in Biomedical Research (UBR). More than 44% of SEEC enrolled participants have actively followed up with the Program after their initial enrollment activities. The next phase, SEEC-2, will help push the national participant count to over 1 million AOURP individuals. We will more than double the above engagement and enrollment numbers, make AOURP a well-known mainstay in our communities, retain the majority of core participants, and foster the adoption of the researcher workbench. We plan to significantly expand our enrollment options and to implement novel activities, in order to make...

Key facts

NIH application ID
11193592
Project number
3OT2OD037907-01S1
Recipient
UNIVERSITY OF MIAMI SCHOOL OF MEDICINE
Principal Investigator
Jacob L McCauley
Activity code
OT2
Funding institute
NIH
Fiscal year
2024
Award amount
$1,250,000
Award type
3
Project period
2024-09-24 → 2026-06-30