Photo: Sabine.ritzinger/Wikimedia Commons.
Photo: Sabine.ritzinger/Wikimedia Commons.
Updated: August 18, 2021 10:59 PM
Created: August 18, 2021 06:45 PM
Mayo Clinic is synonymous with medical breakthroughs — like the just-announced $200 million expansion of its proton beam therapy program in Rochester, which is expected to meet the growing demand for cancer treatment.
Many other breakthroughs are possible because of one of the largest, but least known, projects designed to collect data for research anywhere in the world.
Minnesotans are at the heart of it: People like farmers, mechanics and teachers of all ages and backgrounds who volunteer to help with research.
It's a story that began with a tornado that devastated Rochester 138 years ago this week.
Olmsted County, Minnesota, is home to hundreds of thousands of acres of farmland, the booming city of Rochester, the world-renowned Mayo Clinic and 68-year old Linda Henry.
Henry has dedicated her life to science. But she isn't a doctor; she works in the bakery at Hy-Vee and volunteers to help with research at Mayo.
"I don't think I did it necessarily for myself" Henry said. "But I thought, 'If I can help somebody else through this study then I wanted to do something to help other people.'"
Henry participates in the Mayo Clinic Study of Aging. She visits about every 15 months for cognitive tests. Sometimes, that includes getting a brain scan. She even agreed to let Mayo Clinic perform an autopsy when she dies.
"I believe in it," Henry said. "I hope they'll come up with some kind of a medicine to help people."
"And it's a combination of cutting edge science by the physicians and scientists at the Mayo Clinic, coupled with the people in the community who are willing to help out," said Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer's Research Center and the Mayo Clinic Study of Aging. "And that's a unique combination that probably is not paralleled anywhere."
It all began with a disaster in Rochester on Aug. 21, 1883.
"We were born in a storm here in Rochester," said Matthew Dacy, director of the Mayo Clinic Heritage Hall. "A tornado struck the city, causing great devastation in 1883. Father Mayo was in charge of helping the survivors. He reached out for help to Mother Alfred Moes, who ran a Catholic teaching school. She sent her sisters to be his nurses."
The response to that storm was the beginning of the community partnership with Mayo.
"They brought two groups together; we call them the union of forces," Dacy said. "Different groups coming together for a shared purpose. The Franciscans built St. Mary's Hospital with the agreement that the Mayos would work there as a gift, a service to the community. But this hospital became an incubator of innovation, new discoveries and new advances. The word began to spread. And so this model is extended now all around the world with Mayo as a global resource, but it began here with a community partnership."
The Rochester Epidemiology Project was born out of that community partnership. Since 1966, patients in Rochester and Olmsted County have been asked to let Mayo Clinic and Olmsted Medical Center use their health care records for science. The relationship has produced a huge, always-growing pool of medical data. In 2006 the REP expanded to include the 27-county Mayo Clinic Health System in Minnesota and Wisconsin.
"In Olmsted County, we have about 150,000 living people in the lab," said Dr. Walter Rocca, co-director of the Rochester Epidemiology Project. "But if you go to the 27 counties, we have 700,000 people currently in the system. And, of course, this changes continuously because people come in, they go out, they die, they move. We would have record information for 1.5 million people altogether."
Rocca said the long-term community collaboration puts Mayo in the center of one of the few places where large population-based medical research can be accomplished. And they share the data with scientists who publish research all over the world.
"So you have the full spectrum of the medical activity," he said. "As of now, we are above 3,000 publications."
The Mayo Clinic study that Henry is involved in uses data from the Rochester Epidemiology Project. The study is making headlines now.
Mayo helped with clinical trials for a new Alzheimer's drug recently approved by the U.S. Food and Drug Administration. It's called aducanumab, which is marketed as Aduhelm.
"Aducanumab is one of the drugs that's designed to remove one of the proteins from the brain that causes Alzheimer's disease," Petersen said. "But before you do that you have to know, does the person have the protein in his or her brain?"
Petersen doesn't think aducanumab is the answer to Alzheimer's disease, but he calls it a step in the right direction. Mayo Clinic is also involved in follow-up studies to confirm its benefits to patients.
Brain scans from living people in the Mayo Clinic Study of Aging will help them track whether aducanumab is working.
"So, individuals will volunteer to come in, have these scans done, and then we follow them clinically over the next several years," Petersen said. "So, we actually see the Alzheimer's process developing in a person."
Right now the Study of Aging is confined to people in Olmsted County.
"We've seen over 6,000 people in the Mayo Clinic Study of Aging over the past 16-17 years," Petersen said. "We keep about 3,000 individuals active at any given time and we see them every 15 months."
Petersen said to increase the diversity of the people involved, the Study of Aging is expanding.
"Most of the residents, especially in the older segments of the population in Olmsted County are of Northern European descent," he said. "Most of them are white. So the data that we've been generating, while very accurate, may not be reflective of a broader swath of the American population.
"So, to react to this we are going to expand our study with colleagues at the University of Mississippi in Jackson, Mississippi, where they will be recruiting a cohort of African Americans as well as Caucasians. And we're also going to expand to our sister in Florida, Mayo Clinic Florida in Jacksonville, Florida. And they will be recruiting an African American cohort and a cohort of Latinos as well."
It could lead to another medical breakthrough made possible because generations of Mayo's neighbors have answered the call to help.
5 EYEWITNESS NEWS ASKED why the community is so invested in Mayo Clinic.
"Well, our firm our first and closest patients are our neighbors," Dacy said. "And the people at Mayo, we live here, we work here. We're friends with people in town."
"You know we are in a unique place," Rocca said. "It's in the middle of the Midwest, not too far but far from the big cities. People here are rural people, you know, quite willing to collaborate and to be engaged."
"I think it's been a love affair between the community and the Mayo Clinic and Olmsted Medical Center for many, many years," Petersen said. "And it really involves trust. I think the people of Olmsted County trust Mayo; Mayo trusts the people of Olmsted County."
"I believe in it," Henry said. "I believe in the study, and I believe in Mayo. I think Mayo is just such a miracle place."
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