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Getting Involved in Alzheimer’s Research Studies

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Suzanne is joined by Dr. Paul Winner, the Senior Director of the Premiere Research Institute and Attending Neurologist at Palm Beach Neurology in West Palm Beach, Florida.

Dr. Winner says, “We’ve been through research for a very long time. Most of our patients and research are actually the patients from our practice. We’ve been doing the best we can to try to help them. It has been hard. It has not been easy for many years. But things have changed. About three years ago, we started to get a much better understanding of this illness. We had some of the right medicines, the monoclonal antibodies to remove amyloid. We just didn’t have the right dose, and we were studying them for too short a period of time, because we didn’t understand the disease and what was happening. That has changed. We now understand to use the higher doses. We have a better handle on determining what side effects will occur in what patients. So we have bio markers that let us know: this is an Alzheimer’s patient, this is a patient who has this genetic profile, this is the right study for them, this is the right monoclonal for them, because we already know the paradigms. We didn’t know that many years ago, but we do know that now, and now we’re seeing that we need a little more time. Patients have to give us a little more time. The medicines are working, but many of them take a year, two years, to really show that clinical response that we want to see. So that’s very important, and that’s part of learning and educating. But probably the most important thing to take away is that it’s not just one or two medicines anymore. We are going to use multiple medicines depending on the situation.

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“But the very first thing you have to do is get diagnosed correctly. So if there’s any history in your family of dementia, even if it wasn’t diagnosed as Alzheimer’s, you need to be evaluated, if you’re 50 or older, because that’s where most of our studies start, we may even go younger than that. Definitely by 60 you need to start to be evaluated to see if you have those risk factors in your family. If you’re not, and your family’s lived to 105 and no one’s ever had dementia, you may not be at risk. Still not a bad idea, though, at least by 60 or 65, to start getting an occasional neuro-behavioral assessment. Get a baseline of where your cognitive function is. Get a baseline of how your brain is working. We have something called an EVOX. It’s a very easy machine. It’s a much more sophisticated machine than an EEG. They’re a little expensive and hard to do right now, because we don’t have enough machines in the country. But eventually they shouldn’t be as expensive, and they can be used as a screen. No amyloid, you don’t have Alzheimer’s. Present, doesn’t mean you have Alzheimer’s yet, doesn’t mean it’s gonna be bad yet, but you do have to follow up. You can’t just forget about that, because we can take it out and get you better if it is something significant.”

“Right now, the most advanced evaluations and the most advanced treatments are inside the research. We are still recruiting for this new targeted Athira 1017, the FOSCO, we still have some recruitment going on. We’re also recruiting for many of the other studies as well. Right now, all these bio market tests, different ones are done for different reasons. Many of them, you get a PET scan or a tau scan, some of you get both, some of you get the whole thing, some, you just get segments that are needed, to prove whether the medicine is working or not working. All of them have neuro-behavioral testing done serially throughout, to see how you’re clinically doing. But what’s more important than anything: how you’re doing, and we can monitor that. How are you doing with your family, how is the caregiver doing? You can’t just use medicine alone as well. You still have to do exercise, you still have to do diet, you still have to control the blood pressure, it’s like any chronic illness. This is a neuro-degenerative disease, a chronic illness that has to be fought at every single level, and you have to support the caregiver, the family, and you have to obviously keep the patient number one.”

Learn more about the Athira Pharma Alzheimer’s LIFT-AD research study, Interested in learning more? Contact Premiere Research Institute at (561) 296-3838, contact Dr Winner at (561) 851-9400 or learn more about him here. This podcast is courtesy of Athira Pharma.

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Originally published November 28, 2022

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