National program aims to improve medical research and treatments through diverse health database
By Anita Weier
Northside News
The All of Us Research Program at the University of Wisconsin-Madison is one of numerous sites nationwide actively recruiting and enrolling participants into the program, with the goal of reaching one million or more in order to improve the future of health research and treatment for generations.
UW-Madison is part of a Wisconsin consortium that includes the Marshfield Clinic and the Medical College of Wisconsin. Other consortiums nationwide link other well-known research universities, hospitals and medical centers. The All of Us nationwide program launched in May 2018 and has already enrolled more than 200,000 participants.
An All of Us representative has been working with the Northside Planning Council to let Northsiders know about the program and how they can join it. (Full disclosure, a relative of the author of this story is involved in the program at UW-Madison.)
“We are trying to foster a meaningful presence in our north and east side communities,” said Tyson Jackson, community outreach specialist for All of Us. “We have been doing enrollment at East Madison Community Center and have enrolled at an excellent rate.” All of Us representatives also attended Mallards games and the Mendota Block Party.
“It’s incredible how far this initiative has progressed in a relatively short timeframe,” said Dr. Beth Burnside, co-principal investigator with All of Us-UW. “There’s a lot of work yet to be done, but our UW engagement and enrollment teams are excited about the response the program has received on-campus and in the greater Madison community.”
The overall program is building the largest health database of its kind in order to explore how lifestyle, environment and biological makeup affect health and disease. “It can take other research studies decades to get where we are,” said Eric Dishman, director of the All of Us Research Program.
Perhaps most impressive is the diversity of the current enrollees; 81% of the participants nationwide come from communities that have been underrepresented in research.
“Chronic disease falls disproportionately on members of communities of color, so the fact that All of Us is making a concerted effort to include these populations will go a long way toward better diagnosis, treatment and more comprehensively inform us about those who are at the greatest risk,” said Dr. Dorothy Farrar Edwards, co-principal investigator at All of Us-UW.
Participants in the program are asked to share their electronic health record, answer questions through online surveys, have physical measurements taken, and submit samples of blood and urine. Enrollees receive $25 upon completion.
For more information, including how to participate, visit allofus.wisc.edu, email allofus@hslc.wisc.edu or call 888-294-2661.
Your anonymous data will be stored securely at two locations. Health and lifestyle information will be located at the All of Us Data and Research Center at Vanderbilt University and biosamples will be housed in a dedicated biobank at Mayo Clinic.
A database will be created for use in medical research. Information that is made public will be about the group of participants. For example, it might show the number of All of Us participants in your state or the average age of people who have joined. No one will be able to use this information to identify you.
Anyone can get a glimpse of the early data by visiting the All of Us Research Hub (www.researchallofus.org).