More than 5.4 million people in the U.S. suffer from Alzheimer's disease, but physicians and researchers struggle to find them. Including in Tampa Bay.
The problem, outlined this week in the New York Times, is hindering medical researchers as they try to move forward with promising clinical trials aimed at prevention methods or treatment for memory loss. The biggest roadblock is identifying enough patients to participate.
Jerri Edwards, a professor in the Department of Psychiatry and Behavioral Neurosciences at the University of South Florida, will need to recruit 600 to 700 healthy, older adults with cognitive issues ranging from mild to none for two ongoing clinical trials related to dementia over the next two years.
"To meet that criteria, I'll need to talk to 1,500 people," she said. "And that's just me, and my lab. And there are so many more researchers."
At Byrd Alzheimer's Institute run by USF Health, the number of participants in its memory clinic could reach 3,000 in a year.
"But not all want to be in studies or are eligible," said Dr. Amanda Smith, the institute's director. "Some of the for-profit research sites have a lot more volume coming through the door, and they end up having a lot more screen failures, or people who aren't eligible. Because we often know our subjects before screening, we try not to waste their time and ours."
The issue is ever-present, Smith said. "This is a worldwide problem."
The institute was created in 2002 as an independent, state-funded facility in Tampa and was championed by former Florida House Speaker Johnnie Byrd, whose father suffered from Alzheimer's. It is involved in several large, multi-center trials aimed at the prevention and treatment of Alzheimer's disease, as well as pilot studies testing new methods for the first time.
USF researchers cite several reasons for the recruitment barrier.
"A lot of people do want to participate," Smith said, "but they have an exclusionary health problem," which seems to be the No. 1 obstacle in trying to recruit seniors. That could be because of other health issues, or the medication they take.
"For example, someone who has a pacemaker, and therefore can't have an MRI that is required during the study, wouldn't be eligible," Smith said. "Or in some studies, it is because a procedure like a lumbar puncture (or spinal tap) is mandatory and the patient does not want to have one."
Other times, it's because of more logistical issues: For instance, transportation can be tough in Tampa Bay. Sometimes potential patients don't have someone to work with them as a "study partner," or someone who serves as an informant to provide input on how the patient is functioning day-to-day, Smith said.
But not all trials related to dementia require patients who have already been diagnosed. Edwards is looking for healthy adults where memory loss may run in their family.
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"Most of the time, people start to think about it when it's too late, and they're already experiencing the onset of dementia," she said. "It can be hard to reach these communities in time. It's tough to communicate."
Edwards said she often gives educational talks in the community to reach these groups. Her cognitive lab also runs advertisements in newspapers.
The Byrd Institute operates a mobile research suite, a 57-foot trailer that can be taken to communities like Sun City Center or The Villages with high concentrations of older residents. The unit is outfitted with features such as exam rooms and a blood lab, allowing researchers to get the information they need. It has enabled the institute to double its recruitment efforts, Smith said.
"While the initial expense is large, ultimately if we can enroll and finish studies faster, we will save both time and money rather than having them to come to us," she said.
Contact Justine Griffin at firstname.lastname@example.org or (727) 893-8467. Follow @SunBizGriffin.