By Breanna Mona
Alzheimer’s is a disease often battled privately at home by patients, loving family members and a network of caregivers. Publicly, the campaign is waged by dedicated researchers in little-known laboratories and offices.
That’s why it may be surprising to many that Alzheimer’s research is seeing groundbreaking developments, some of them right here in Northeast Ohio.
The disease used to be something “you didn’t know you had until you died. A lot of that has changed,” says Dr. Alan Lerner, Director of the Brain Health and Memory Center in the University Hospitals Neurological Institute.
Alzheimer’s Disease research is taking place in Northeast Ohio with The Cleveland Alzheimer’s Disease Research Center (CADRC) funded by National Institute on Aging. It’s one of 31 Alzheimer’s Disease Research Centers (ADRC) in the country.
The Cleveland ADRC brings together major players in the region’s healthcare network: Cleveland Clinic, University Hospitals, Louis Stokes Cleveland VA Medical Center, Case Western Reserve University and MetroHealth System, all working collaboratively on Alzheimer’s research.
“We’re very fortunate to have this center,” Dr. Lerner says. “It really shows that doctors can transcend institutional barriers to work together on a common and debilitating condition.”
What It Means
The CADRC is led by Cleveland Clinic’s Dr. James Leverenz. “Having this infrastructure really helps accelerate research across everything from diagnosis to treatment to basic understanding of what’s happening with the disease,” he says. “Our big goal is to have an intervention that actually prevents the disease from ever having symptoms.”
The center focuses on atypical Alzheimer’s disease (with an unusual presentation), Lewy body dementia (the disease Robin Williams had), healthy individuals at risk for developing dementia, as well as underserved populations.
With Alzheimer’s, changes in the brain start happening five to 20 years before symptoms start, Dr. Leverenz says. “That gives us a time frame to identify those who are high risk but without symptoms, so we can intervene and delay the onset.”
Volunteers are a huge part of what makes this accelerated research possible. “We can’t do research without people,” Dr. Lerner says.
Why Volunteer?
Carmine Stewart, 69, of Cleveland Heights, explains why she signed up to be a part of the ongoing research. “You’re helping yourself and you’re helping the world. You might give a little blood, but just a little.”
Dr. Lerner says participating in the research locally actually means participating in research across the globe — in a data pool of 31 research centers. “It’s not a case of what happens in Cleveland stays in Cleveland. It’s used by researchers all over the world.” He also adds that the contributions from volunteers are anonymous, de-identified data.
Along with contributing to science, Stewart says participating in the study was also important to her as an African American. “You’ve got to be represented so that researchers can know what happens with this group and what happened with that group.”
Through her participation, Stewart says she’s undergone cognitive testing, provided spinal fluid, and has also had PET scans and MRIs.
The thorough look at her brain and body also gave her the opportunity to learn more about her health and wellness that she may not have known about otherwise, she says.
Like Stewart, volunteers don’t need to experience memory loss to become involved with the research. Dr. Leverenz says that the research involves control groups (people without memory complaints) to see who may develop issues over time. They look to see if there are markers, through imaging, blood or spinal fluid that show if someone is at risk.
“Being involved is a step in the right direction, and volunteers get the feeling that they’re participating in something bigger than themselves,” Dr. Lerner adds.
Stewart adds that participation doesn’t take too much of her time, the center provides a stipend and pays for parking.
Just In
Through its accelerated approval program, the FDA recently approved a new drug called aducanumab — a medication intended only for those with Alzheimer’s disease.
This FDA-accelerated approval program permits earlier approval of drugs for serious or life-threatening illnesses, although additional studies into the drug may be necessary.
Even though the drug is approved, there’s likely to be a delay in starting patients on the medication due to the complexity of patient selection and appropriate administration. Dr. Leverenz says, “It’s also very expensive medication, so we’ll have to see how insurance companies manage it.”
Impact
What all these breakthroughs really mean, Dr. Lerner says, “is that you can get ahead of it and make plans. Plus, some people can find out that they’re really normal — despite what they feel, they may be normal for their age and that should be some degree of reassurance.”
Most of all, this research offers hope. “Help doesn’t always come in the form of a pill,” Dr. Lerner says. “We need to think in a broader context about how we help people. A big part of it is understanding what’s going on in your own body. I’ve often said that Alzheimer’s is about people. We use fancy scans and technology, but ultimately, it’s about people.”
Get Involved
To learn more about the Cleveland Alzheimer’s Disease Research Center (CADRC) or to find out if you are eligible to enroll, call 833-311-2372, visit clevelandadrc.org or email [email protected].
To enroll in a clinical trial or learn more about Alzheimer’s or dementia research studies at Cleveland Clinic’s Lou Ruvo Center for Brain Health, call 216-445-9009.
To enroll in a clinical trial or learn more about Alzheimer’s or dementia research studies at University Hospitals Brain Health and Memory Center, call 216-464-6215.
