(Originally aired August 9, 2016)
Bill Nagely was diagnosed with Alzheimer’s disease in 2009, and for the past three years, he and his wife, Sheila, have made the hour-long drive from their home in St. Petersburg to the University of South Florida Health Byrd Alzheimer’s Institute in Tampa.
"It’s really improved our quality of life to be able to have the resources they have here at Byrd," Sheila Nagely said. "They have a wonderful support group, which really helps me, and they just are connected with all the resources that we need."
About a year ago, Bill Nagely, 74, enrolled in one of the Institute’s clinical drug trials, a phase-three test of a drug designed to reduce the build-up of the amyloid plaques suspected to cause Alzheimer’s, one of the leading causes of death in the United States.
While Sheila said she's not seeing a lot of difference in her husband's memory, as he may be receiving a placebo:
"A big benefit to being in this trial is at the end of the trial, everybody can get the drug," she said. "So that was one of the reasons that we wanted to participate, because at the end of it, he’ll be able to get the drug if he wasn’t getting it during the trial. "
Now, thousands of other Alzheimer’s patients throughout the Bay area will be able to join Nagely in enrolling in a clinical trial, thanks to Byrd's mobile Memory Research Suite – a $400,000, first-of-its-kind vehicle that’s going directly to where patients live.
Institute officials unveiled the 53-foot-long trailer at a ceremony in a USF parking lot in June. The rig, which can be towed to locations by a semi-truck, is believed to be the first created for a Florida academic research facility.
The Institute’s assistant director for clinical research, Jill Smith, offered a walking tour of the 400-square-foot, air conditioned research space. She said visitors first walk – or are brought via a wheelchair lift – into a reception area with a small couch, desk, displays containing information on clinical trials and lots and lots of cabinets.
"When we were making the unit, I told them, ‘Any space you can put a cabinet, put a cabinet,’ because clinical research has lots of stuff," Smith said.
To one side of reception, at the front of the trailer, is an exam room, with a scale, a reclining chair for the patient, and a small desk for taking notes.
"This is...where a physician can do physical exams, neurological exams, any kind of diagnostic procedures that are required," Smith said. "At some point, we may even envision doing infusion-based trials on the mobile unit and it would take place right in this room."
Consultation room two is a smaller room with a table and two chairs. It could pass for a breakfast nook on a mobile home, but it’s actually where interviews with caregivers will be done.
"We do memory testing with a patient, but we do interviews with a caregiver, or what we call in research a ‘study partner,’ because we realize their perspective is extremely important in understanding how someone is doing in their day-to-day function and things that we can’t necessarily pick up on a memory test," Smith said.
Next, there’s one of the largest bathrooms the suite’s manufacturer has ever built, and it's compliant with the ADA, or the Americans with Disabilities Act.
"It’s completely wheelchair-accessible, we have pull doors on either side of it so we close those and open up the entire wall," she said.
Then there’s a phlebotomy suite, complete with freezer, centrifuge and patient chair where blood can be taken by a specialist.
That’s followed by the largest room, farthest from the suite’s generator: consultation room one, where four chairs sit around a medium-sized table.
"That room, we’ll be testing the actual Alzheimer’s patient," Smith said. "We didn’t want them to feel claustrophobic, so it’s a bit more open, but also we can see families for full family consultations, reviewing informed consents, collecting medical information."
Dr. David Morgan, Byrd Institute CEO, said right now, Byrd is participating in between 10 and 15 clinical trials for various Alzheimer’s prevention drugs and other treatments.
However, they can only sign up people who can make the sometimes arduous trip to Tampa. Imagine, he says, how difficult that is for someone with the disease who gets confused or frustrated in area traffic. The mobile memory suite changes that.
"The people at greatest risk of Alzheimer’s are those who didn’t graduate from high school. We’re not reaching them because they’re reluctant to come onto a college campus," Morgan said. "But they go to Publix every day or they go to Walmart or some other retail establishment."
Morgan sees parking the trailer for a few days at a time at sites like that all over the Tampa Bay area – particularly areas with a high number of senior citizens such as The Villages in Sumter County and Sun City Center.
He imagines the day where enrollees in clinical trials might pull up to the suite on golf carts, wearing their slippers.
Most important, he said, is that Byrd gets more people enrolled in clinical trials, which might even shorten the time it takes to get these drugs approved by regulators and out to the general public.
"I see as a goal is if we could get 100 people involved in a clinical trial through this, whereas now at our site we do ten, then we would be a tremendous success," Morgan said.
And success with enrollment could lead to a successful treatment for Alzheimer’s – something a patient like Bill Nagely wants to be a part of.
"They’ll learn more things that’ll help whoever’s like me," Nagely said, haltingly. "I’m hoping this’ll develop into something, whether it’s for me or who, something will be developed and I just, I’m part of it and we’ll wait and see where it goes."
See inside the USF Health Byrd Alzheimer's Institute's new mobile Memory Research Suite on University Beat on WUSF TV Sunday, September 25 at 6 p.m.