All of Us study wants you as partner
Published on Thursday, September 1, 2022
By: Gary Pettus, gpettus@umc.edu
If you’ve ever dreamed of helping find a cure for cancer, diabetes, Alzheimer’s disease or any illness that eludes the healing power of medicine, this is your time.
The University of Mississippi Medical Center continues to recruit Mississippians for the nationwide All of Us Research Program – for the sake of the nation’s health as a whole, but also because it can lead to tailor-made health care for individual Americans who sign up for this groundbreaking project.
“There may be other sign-up efforts in the state, but UMMC is the only All of Us recruitment and enrollment site in Mississippi attached to a health care provider,” said Kristi Cofer, manager of operations for All of Us at UMMC.
The National Institutes of Health initiative is seeking at least one million people to help medical science better understand, and conquer, disease; at the time of a report earlier this summer, around 500,000 had signed up. The total is now 522,000-plus, with approximately 2,500 registered in UMMC’s system, including 2,070 who are fully enrolled in a study that’s expected to run at least a decade.
UMMC’s goal is 3,935 by 2023, but that’s not its only aim: “We are making sure we also seek out and recruit people who have been traditionally underserved and underrepresented in research,” Cofer said.
As of late August, more than 75 percent of those recruited for All of Us by UMMC identify as Black, African American or African, while most of the remainder are White, multi-race or Hispanic or Latino.
Those who become fully enrolled provide urine and blood samples. Data gathered include height, weight, waist, hips and blood pressure measures – baseline numbers for record-keeping.
“Each participant’s DNA is tested and each will receive an ancestry report,” Cofer said. “It provides information similar to that of 23andMe, but, in this case, it’s free.”
Another report yields a genetic profile, Cofer said. “If any condition is flagged in that report as pathogenic [disease-causing], the participant will be contacted and given resources, including a genetic counselor, if needed, for a confirmatory test.” This testing can help disclose a person’s risk for heart disease, cancer and other conditions.
Every sample goes through the genetic testing process, which is expected to begin in November, Cofer said.
“There will also be a pharmacogenetic report, which describes how a person’s body reacts with certain medicines,” Cofer said.
These reports contribute to the cause of precision, or personalized, medicine, an approach that leads to treatments for patients suited to their individual differences – in everything from the way they are made to the way they live, work and have fun. Guesswork and the one-size-fits-all approach go out the window.
“The biospecimens and health information collected are a wonderful resource,” said Dr. Gouri Mahajan, assistant professor of pharmacology/toxicology and director of the UMMC Biobank. “Because it’s all tied to the genetic information, it becomes even more valuable.
“It’s an open source for researchers; for example, someone who wants to study diabetes, or any mental health disorder,” said Mahajan, a co-principal investigator for UMMC’s All of Us site, along with Dr. Richard Summers, UMMC professor of emergency medicine and former associate vice chancellor for research.
UMMC’s All of Us site is part of the UMMC Biobank, which recently came under the direction of the UMMC Department of Pharmacology and Toxicology, chaired by Dr. Babbette Lamarca.
“By being under that department, All of Us is receiving more robust, organizational support to make this research program even more successful,” Mahajan said.
Anyone considering joining All of Us must be at least 18 years old and provide consent for researchers to study the material collected. “But no researchers will be able to know whose information they are seeing, or anything that might identify them,” Mahajan said, “unless the participant chooses to share it.” Anyone can withdraw from the study at any time.
Those who wish to enroll in All of Us or want to learn more about it are invited to visit the recruiting tables set up at the offices of the University Rehabilitation Center-UMMC on Lakeland Drive or at the Jackson Medical Mall on Woodrow Wilson Drive.
“We do have pop-locations as well within UMMC and outside it,” Mahajan said. Those have included the School of Dentistry at UMMC, Grant’s Ferry-UMMC in Flowood, the Student Union on the UMMC campus and the Mississippi Museum of Natural Science in Jackson.
Cofer gives a presentation at each pop-up site and, if five or more people show interest, she and her staff set up a time to return and help them complete enrollment.
“We return with a mobile lab to take biospecimens,” she said.
The first step in enrollment is to register; that can be done online on the All of Us website or through its mobile app. The second step involves specimen collection – that’s when someone is considered fully enrolled.
“The consents and surveys can be completed digitally, but an appointment must be made with the team to complete enrollment through the bio specimen collection,” Cofer said.
All specimens are sent to the Mayo Clinic, a partner with UMMC. Cofer and Mahajan also think of the participants as their partners; they want to keep them engaged and informed while also giving them the opportunity to become part of other studies.
“We don’t want them to think that they just donate their samples and that’s it,” Mahajan said.
— — —
The All of Us Research Program is open to people 18 or older living in the United States. For details or to enroll, go to All of Us Research Program or call (601) 815-5073.
The above article appears in CONSULT, UMMC’s monthly e-newsletter sharing news about cutting-edge clinical and health science education advances and innovative biomedical research at the Medical Center and giving you tips and suggestions on how you and the people you love can live a healthier life. Click here and enter your email address to receive CONSULT free of charge. You may cancel at any time.