WAM spoke with Dr. Joshua Grill, the director of UCI MIND, on the importance of clinical trials and what researchers are doing to attract more participants and make it inclusive.
Read the Q&A with Dr. Josh Grill below.
WAM: You state that we won’t find answers to Alzheimer’s without everyday people getting involved in clinical trials. Why? And what reason is there for someone with Alzheimer’s to be part of a trial when we know there is no cure?
Dr. Grill: Most people don’t realize that the only way we get new and improved medicines is through clinical trials. And if no one participates in clinical trials, we don’t get new and improved medicines. There are many reasons that people do participate in trials—they are altruistic and want to help humanity, they want to help doctors and scientists make progress toward cures, they want access to experts to better understand their condition, and of course they want access to promising medications that may not yet be FDA approved or widely available. For most people, it’s a combination. But in all cases, those people are heroes and research champions. And they deserve as much credit for our progress as do the doctors and scientists.
WAM: A recent survey estimated that 99% of all people who are eligible for participation in a clinical trial never get connected with one. What are the barriers to people signing up?
Dr. Grill: Unfortunately, there are many barriers, and awareness is a big one. Few people are aware of clinical trials and, if they have thought about it, they expect that their doctor will talk to them about it. But few physicians are aware of clinical trials and fewer still have time to talk about them with patients. As a result, the most common paths to participating in a clinical trial are 1) a person’s doctor is also a clinical trial investigator (then they make time to talk about studies) and 2) the patient and their family are seeking out information and trying to be seen by research centers where trials are happening more often. So doing a better job of getting the word out about trials—to doctors, patients, and the general community—is really critically important to our efforts to develop better treatments and preventions more rapidly.
WAM: You are passionate that it’s important to get healthy people involved in studies—and people who might be at risk for Alzheimer’s, but have no symptoms. How will either of these groups further our understanding of Alzheimer’s?
Dr. Grill: Many in the field worry that once symptoms have started, it may be more difficult to slow or stop the progression of Alzheimer’s disease. I’m still hopeful that we can find treatments that stop the disease from spreading in the brain and that this will be enough to stop progression, no matter when the treatment is started.
But clearly, there is great power in the idea of intervening even before memory problems begin and we now understand that the brain changes, namely the build-up of amyloid plaques, do begin a decade before the symptoms. This creates an important opportunity to test promising treatments during this window of time for their ability to delay or prevent symptoms from beginning. This is what the AHEAD Study (www.aheadstudy.org) is doing. We are testing if treating people with evidence of plaque build-up in their brains (but normal memory performance) with a drug that lowers the levels of those plaques can delay or prevent the onset of memory problems. It’s an incredibly exciting study.
WAM: As you know, WAM funds women-based Alzheimer’s research to help compensate for the historic underfunding of women’s health in general. Where are the gaps in knowledge we still need to fill when it comes to women and Alzheimer’s?
Dr. Grill: I’d say the gaps are still mainly in understanding why women are at increased risk for getting Alzheimer’s disease. That’s why we are so proud of our UCI MIND/WAM Women’s Initiative to fund science to try to understand better this disparity in risk. So far, we’ve funded $500,000 in research projects that have made novel discoveries in the role of genes and brain inflammation. Ongoing studies about which I’m extremely excited are examining the potential differential roles of hormones, sleep, and brain pathologies.
WAM: The other enormous lack of data is how Alzheimer’s affects communities of color. What are the greatest challenges in connecting communities of color to clinical trials – and what is science doing to overcome them?
Dr. Grill: It is definitely correct to say that this is enormously important. And the challenges are many. We know that, as investigators, we need to do a better job of being inclusive and ensuring that our studies enroll populations that are representative of all people who suffer from Alzheimer’s disease. That means that we need to better connect with communities of color, and gain and keep their trust by having meaningful two-way dialogue, being present in the community, and staying present. A lot of us are trying to do that. But in the end, if we want treatments that work for everyone and are safe for everyone, we need EVERYONE represented in our research.
WAM: You say Covid has taught us a lot about how to reach people and engage them in clinical trials. What are some of the lessons?
Dr. Grill: Yes, I think in particular Alzheimer’s disease researchers around the country have done a tremendous job of helping our communities during the COVID-19 pandemic. For some, that meant helping to make our communities of older people informed and aware of available resources. For others, it meant food drives and the delivery of key items for survival. And don’t forget, some of my clinical colleagues were called in to staff the Emergency Department during some of the worst surges. But we did also witness a pretty amazing and rapid performance of very large clinical trials of the COVID vaccines that did enroll diverse populations. Obviously, awareness of COVID wasn’t a problem, it dominated the headlines day-in and day-out, but the vaccine trials did do an amazing job of mobilizing large forces of community partners to outreach to communities all over the nation and, in some cases, go door to door to find volunteers. I hope we can learn from that experience and see similar outcomes in Alzheimer’s prevention trials, not only from the standpoint of inclusive recruitment, but also from the standpoint of developing therapies that meaningfully protect people from disease.
If you would like to learn more about Dr. Josh Grill, click HERE.