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Brought to you by the Alzheimer’s Therapeutic Research Institute (ATRI), The Alzheimer’s Research Podcast offers an inside look at the science, stories, and people driving progress in the fight against Alzheimer’s disease. Through engaging conversations with researchers, study participants, and leading experts, we explore the latest discoveries, ongoing clinical trials, and the real-world impact of groundbreaking studies.
Welcome to the Alzheimer's Research Podcast, a show reshaping and leading the conversation around Alzheimer's prevention, brought to you by the Alzheimer's Therapeutic Research Institute at Keck School of Medicine of USC. Whether you're a clinician, a researcher, or someone who wants to change their mind, these conversations explore the possibilities within reach to prevent and effectively treat Alzheimer's disease. I'm your host, Shelley Moore.
Mickenzie Vought:And I'm your cohost, Mickenzie Vought.
Shelley Moore:Hi, everyone. I'm so excited about today's episode, Mindy Aisen. Doctor Mindy Aisen is the Director of Clinical Affairs at ATRI. She's also a Clinical Professor of Neurology and is a board certified neurologist licensed in New York and California In research administration, together with Belinda Gonzalez, they've established our participant support center to provide a direct line of communication for participants interested in research. I think you're gonna really enjoy, getting to put these faces with these two people today.
Mickenzie Vought:Absolutely loved getting to meet Belinda and get to talk a little bit more with Doctor Aisen in a different angle of what she brings to our ATRI. And so I just know that you're gonna love this. And if you are someone who has questions around the process around research, if you or a loved one would like to take part, I just really walked away knowing that you would be met with compassion and expertise from their entire participant support center team. So we're excited for you to get to know these two.
Mickenzie Vought:I'm so excited to be sitting down today with Belinda Gonzalez and doctor Mindy Aysen. Today, we get to chat with them both to hear a little bit about what they have been creating to better support participants at ATRI as a part of the participant support center. So they are providing a direct line of communication for participants, and I'm excited to dig in.
Dr. Mindy Aisen:Thank you for having us.
Mickenzie Vought:It's gonna be really fun. I would love to hear if you'll just kinda take us back and share about the impetus of the participant support center and what you guys have been building together.
Dr. Mindy Aisen:Well, let me start because I've been at ATRI longer, and, we've had a number of different programs that encourage people to learn more about Alzheimer's research and even potentially participate in Alzheimer's research. At first, our ability to interact with people was kind of limited. We didn't have a live call oh, call center. People would email us or text us or write handwritten notes to us. And so it was kind of a slow process and not really, that well organized in terms of giving consistent accurate information.
Dr. Mindy Aisen:So that that's how things began. We realized that we had a need to serve the public better and to help anyone who might wanna participate in research, learn more, about things and in a timely way. Then, the nature of our research evolved, and biomarkers became part of the diagnostic process. So Yeah. We when we started all of this, we were in that phase of going from the only way to diagnose Alzheimer's disease was with a brain biopsy, which was not going to be something we encouraged or Yeah.
Dr. Mindy Aisen:Avowed doing, to having PET scans that were accurate but not widely available, to having PET scans widely available. But now spinal fluid and even blood tests, plasma tests are going to soon be an accurate, widely used worldwide approach. Now when that happens, people can reach out to us more directly because they're not required to get all of their diagnostic information necessarily from their local, facility, but can reach out to us directly about what's going on. And we believe that more and more will take an active role in the research process. So we won't be, you know, developing the trials and then asking partners in Rhode Island or Tennessee or Florida or Texas to do all of the interacting with our patients or our volunteers.
Dr. Mindy Aisen:We can give people more direct information if they want it. So we hope that we can be better partners to our local groups throughout the country and throughout the world. And so we saw more and more of a need to, of course, support people engaged in research, but also support people who are learning about research and then the general community because we are an educational institution, and we are a research program, and people who aren't yet touched by degenerative dementias wanna learn things. So we've gone from very little contact with the public to more and more direct phone conversation, email conversation, and other working on other electronic means of interacting with people. Then we recruited Belinda, who has great experience in developing and running call centers in all different industries to help us have a program that was pretty much state of the art, and it's something brand new for us.
Shelley Moore:So exciting. I'm really I'm really excited to have Belinda on our team, you know, just seeing how we've come so far in our work. And now to have this, top tier person who's really gonna take us to the next milestone in our research and and being able to reach communities that aren't going to have to be as tied to, you know, physical location. So I'm so excited to share, you know, why you came to ATRI and what you're expecting to bring, to this team.
Belinda J. Gonzalez:Well, you both. I, I love what we are doing. Honestly, when Mindy interviewed me about a year and a half ago, it was presented to me as, as an idea and as a need, right? I think as the feedback has come in throughout this year, because at first it was just me trying to figure things out with Mindy, and with the help of Shelley and all of our other, you know, great team leaders. I think that where we started and where we are now is, in a very good place to make 2025 a great year where we have systems in place and processes in place.
Belinda J. Gonzalez:It doesn't just require that call center team, right? The main mission is to be able to respond in a timely manner with accurate information and getting people connected to the right, study and the right resource. And that, that will take time. However, we really just want to hear what everybody has to say and we want to forward that feedback to researchers, to everybody that's at ATRI so that we can help in any way that we can, but participants more than anything have, you know, valuable information for us and we want to hear them all And we're very proud of what we've done so far.
Mickenzie Vought:What I took away and hearing you talk all about it and where it was a year ago versus where you're taking it. I love the idea of how much you're centralizing information and creating so much cohesion across the entire organization. When you kind of look at the scope of calls that your team is fielding, are they mostly fielding calls from someone who's already a participant or wanting to be a participant? I'm really interested in how you are leading out in the industry and leading out for the community around Alzheimer's and dementia. Are you getting people who are more disinterested and kind of on the front end of maybe a diagnosis or a family having diagnosis?
Mickenzie Vought:What is the scope of calls that your, your team is taking?
Belinda J. Gonzalez:So right now we're a team of four participant support representatives and, myself. And of course we escalate things that we don't have the answer to, to Mindy and other PIs or directors, right? We definitely hear a lot more from study participants, people that are already in trials and are wondering about maybe an update or a change or even something technical where they are not able to finish their cognitive test or are wondering about if I am participating in one study, I participate in more? Which the answer is almost 100% yes, so always ask and we will always direct you. And then we hear from, secondly, from, you know, people who want to participate.
Belinda J. Gonzalez:So those are our one, two. And when I say people who want to participate, I not only mean potential participants in the right age group, but also their family members or caregivers, just concerned friends, you know? I'm participating in a study, can I refer my friend? She's been through this or he's been through that, can they participate? And so we just guide them to maybe how to let them know where to access so that they can get the resources that they need and start participating.
Shelley Moore:So, when we're talking about participants and their questions, that come up, what do you think is the biggest concern for people that you're talking to about research participating in research?
Belinda J. Gonzalez:I think privacy does come as one of the concerns, you know, what is being done with my information, what is being done with my blood sample. We're very high on their security, you know, and we are basically the only team can see, that can see their contact information and some of their study results. We have to keep information separate, but basically, privacy is a big concern. They also are very interested in what their participation will result in if it makes a difference and want to know results, right? Want to know, I participated in this study and what came about it, right?
Belinda J. Gonzalez:What, what can, what did my results help do, help progress? And so, those are the two top things that are brought up. Like I mentioned earlier, we, we have, you know, we have, we have people that come back and want to do the newest study. And so they want to know how they made a difference. We love to hear those stories.
Shelley Moore:And in terms of calls that are getting escalated to you, Mindy, what are the common things that may come up from the standpoint of a medical response that might be sent to you?
Dr. Mindy Aisen:I think that the studies we're doing kind of fall into two buckets. One is diagnostic tests and how accurate they are and how, for example, the plasma test compares to the PET scan. So in the past year, we've done a lot of sampling the plasma and comparing it to the PET scan, and people had a lot of questions about what is my plasma value that I'm eligible or not eligible to be entering a study? What does that mean? And so I answer that pretty directly depending on what I gauge people are comfortable knowing.
Dr. Mindy Aisen:But, basically, an elevated level would mean that they're more likely to to have amyloid in their brain and therefore potentially Alzheimer's disease. And if that's the case, we are referring people even who don't have symptoms yet, to try these medications that are right now approved and pulling amyloid out of the brains of people with diagnosis of Alzheimer's disease. That's not an experiment anymore. It's an experiment we did. You know, that was research.
Dr. Mindy Aisen:Now it's current practice. But now we're looking at primary prevention or prevention in any case, preventing cognitive changes, preventing memory from fading. So people wanna understand what what does that blood level mean? And I'm not able to say this means you have Alzheimer's. This means you don't have Alzheimer's.
Dr. Mindy Aisen:I can sort of tell them the likelihood. And we've decided collectively that I'm a neurologist, so as a physician, I might be the better person to talk people directly about that kind of information since it's not current medical practice yet. So that's an example. The other question we get is how safe are these medications? Is the risk worth the potential benefit?
Dr. Mindy Aisen:And so I describe there are side effects to everything. You know? To a Tylenol, there's a side effect. So I describe what side effects we have seen and how we try to avoid any serious complication from ever occurring. I'd say those are the two classes of question, but we get other questions.
Dr. Mindy Aisen:We get questions about what does this part of the brain do? And, you know, we people ask us all sorts of things, and we try to give an accurate response to everybody.
Mickenzie Vought:That's so fascinating. And I think the topic of conversation that continues to come up is how do you give participants back their research, their results in a way that is digestible for them, that's giving them the information, not providing too much information and really giving them agency and autonomy over their research and their results has been so fascinating to be on this side of it. And to hear that. And so I think that's just another layer hearing you talk of, okay, this is coming out. What does that mean?
Mickenzie Vought:And having a doctor on the other side to say, let me walk you through that and kind of take some of the fear and anxiety around that. Because someone's not calling you if they're feeling relaxed about this. They're curious, or there's a heightened anxiety or a fear or apprehension. So that's so fascinating.
Dr. Mindy Aisen:I I think regarding that, we are really hoping, and I know the call center participant support team really wants to help us continue to learn and actually conduct research about the nature of these conversations and how we can minimize anxiety and and maximize information, as you say, in a digestible way. So we're constantly taking notes and reviewing everything with our clinical operations team, our data management team so that we present information that's not confusing and not frightening even and just in an accessible manner but accurate. That makes total sense.
Mickenzie Vought:And I think you are that first line of communication, Belinda. So I'm curious, how do you train your staff to maybe show up in a different way than they may in another support role? I would just imagine that these calls would be a little atypical. And so there would be a little bit of compassion and understanding and empathy and knowledge and all of that. So what makes a good support team member for ATRI and the clients and the participants that you talk to?
Belinda J. Gonzalez:That's a great question. I think that from when we were interviewing people, and, Mindy and I were in all of the interviews. Yeah. We definitely were looking for compassionate people that had experience with speaking with our, you know, elderly groups or have, done volunteer work. More than looking at people with call center experience because this is, you know, we are the call center team, but there's a reason why we call ourselves the participant support, you know, team.
Mickenzie Vought:Yeah.
Belinda J. Gonzalez:Because we are here to hear from them, right? We're here to support the participants and our potential participants and their families. And so I think part of the part of the mission of the team is to portray that and to never treat somebody like another number or just another person joining a study. That's not what our participants are. Every participant is very valuable.
Belinda J. Gonzalez:Every participant, we want them to be successful in completing the trial, right, and not feel like they can reach out to anyone at any time with any question. Every question is valid, right? Every doubt is valid. Like I mentioned, only talking to, participants. You will be talking to people who are possibly scared.
Belinda J. Gonzalez:Oh, my family, you know, my parent, my grandmother, passed away from Alzheimer's. Am I going to get it? Right? We're not physicians. We can refer to Mindy and other doctors in house.
Belinda J. Gonzalez:We get people with fear sometimes, we really need to understand where they're coming from and why would they have this fear. I'm not just here to answer. I'm not a voicemail box. I'm another human, right? And so I think that we need that, that grace, over the phone.
Belinda J. Gonzalez:We need that patience and we need that compassion. We are representing USC, we're representing ETI, we're representing all the research that is being done. So you have to also love what you do. Understand that there is a bigger purpose, to what you are doing and that one person can make the difference. And that's the type of people that we love to work with here at this team.
Mickenzie Vought:Awesome. I feel that coming through the screen from you.
Shelley Moore:So tell me a little bit about what are the key things that your background has brought to this this role and building this for ATRI?
Belinda J. Gonzalez:Well, I think that, I started working in call centers when I was 18 years old. Oh, wow. I am 40 now, so twenty two years later, if you were to ask me, never thought that I was going to be doing this as a career. However, I, I found very interesting the, my parents are teachers, both of them were elementary level teachers. And so, I've never worked for a school but I've always known them to lead groups and within the call center I found that I could be a trainer.
Belinda J. Gonzalez:That's where one of my first positions. And from there, was able to learn how to develop leadership in others and, as I was developing my own. I worked for all kinds of types of clients and companies, financial and collections even, customer service, technical support, and I've been in a lot of different roles and then leadership roles. I've been in a lot of countries because I've also implemented several call centers around the world, South America, Canada, And I think that all of that experience just taught me how to work with people because that's all it is. Towards the last ten years, I worked more in the medical field for the call centers, for, you know, hospitals, and, so I learned about HIPAA and health and all of the security that goes along with holding medical records and personal health information.
Belinda J. Gonzalez:Professionally, I can say that all of my career was leading me up to being able to do this, but personally, towards the last few years, my uncle who was basically the patriarch of my father's family, who's also a, world famous foxer from He's the in the Hall of Fame. Oh, wow. Yes, he was diagnosed with Alzheimer's. And so about a year before I was hired, that happened. He was one of the eldest who, through his career in boxing, led the family, you know?
Belinda J. Gonzalez:And so, he was always like my grandfather kind of figure and my dad and him were super, super close. And so, he is the personal link that was at the end, why it's so personal. And I see my cousin's struggle with him and and him just being going through it so strong, as he's always been, but how this has impacted him and his relationship with others and with my cousins having a hard time. And so, I, I just remember how he used to be with all of us, bigger than life, and I also know what it is like to, to be going through this. It's hard for everyone and so I think that in, in my life, everything that I've been through has prepared me to, to be here today.
Belinda J. Gonzalez:And so, of course, that doesn't go without having great leaders assigned to you that enable you to get to where you need to be And obviously, I wouldn't be here without Mindy, of course, and her support, and of course her choosing me, ultimately, a year and a
Dr. Mindy Aisen:half ago. If I could just comment about a couple of things. First of all, I do think that it's worth mentioning about your uncle and the boxing issue because sports injuries are very much associated with increasing the risk for Alzheimer's and dementia. That would be boxing and football, we hear mostly about. And, fortunately, with that realization, the international sporting fields are taking more and more action to protect participants in those sports.
Dr. Mindy Aisen:Soccer is another one where people it's not so widely known. But, again, whenever you've got the skull meeting a fist or a ball, these are issues that we we can't we can't sweep under the rug. I'm not saying we have to abandon these sports, but we have to be more cognizant of ways to protect the athletes. The other thing is I think Belinda is way too modest because, yes, she's got the wonderful people skills and definitive call center experience, but she also has, I think, two bachelor's degrees. Her ability to switch from Spanish to English is absolutely flawless, which is very important when speaking to many of our participants who are Spanish speakers.
Dr. Mindy Aisen:But the the business of putting together a call center is quite elaborate. And although it's it's relatively small at the moment, we know it's going to grow a great deal. There's a lot of technical expertise she's had to employ to interact with our data management teams, our informatics teams, gathering all of the information from each and every one of our people who call in so that we can record it in a way that we can go back and review what we said and why we said it and and the actual demographic information about people calling. She's had to work with a lot of different software programs to pull this together and work with some very sophisticated computer scientists within ATRI. So, her business background is extensive and very important to us.
Mickenzie Vought:I'm glad you took a moment to brag on her a little.
Belinda J. Gonzalez:I almost, I almost don't take those things into consideration because there to me just needs for the call center to operate. But yeah, definitely all that technical piece is based basically on the years of working at a call center, the cables, connecting the computers and getting down, putting, you know, helping make sure that everything is set up for us to just take one call, right? I almost take that for granted, but yes, I remember putting all of those things together now that you mentioned it, Mindy.
Mickenzie Vought:And I'm glad that you mentioned, the bilingual aspect of you in particular, Belinda. Are other members of your team bilingual? What languages are you able to speak with participants in? That's such a a valuable asset that you're bringing. And when we asked you if you wanted to do the interview, you said, yes.
Mickenzie Vought:I can do it in English or Spanish. And I was like, yes. We wanna go to you in Spanish, but probably not us.
Belinda J. Gonzalez:I am, you know, a native Spanish speaker. I'm, I'm originally from Mexico and so that's why I can speak both languages. There are two other members of our team, so in a total we're three, who speak Spanish and English. Extend to that, like I mentioned, this coming year, now that we're set with more systems and processes in place and the team has a place where we can grow as well, a location where we can grow our own office, and so we can definitely want to reach more community. And so in underrepresented communities, so we are going to be looking for other languages to expand as well.
Mickenzie Vought:Thanks for sharing that. I know a lot of these conversations have been around opening up the research community and opening up the process to people who historically have been kind of marginalized and not brought into research. And so I think that's such a valuable piece to have someone if you're not native English speaker and have apprehension around the research process or being a participant to have someone on the other side who can speak to you in your native language, and really bring clarity and peace to that. I'm just so grateful. So and I think it just goes to this larger mission that we've continued to talk about of creating diverse science and how
Belinda J. Gonzalez:that's Absolutely. Take And I just wanted to add that when we, when we know that there's someone who is a Spanish speaker, especially in the age group that we are talking to, when we switch to their native language, there is a different openness about the phone call and the way that they, oh, you know, feel more at ease to sharing their questions and their doubts and, of participating. Sometimes they're almost, you know, doubting if they should or not, they're scared or they are just wondering, you know, what would happen, if I can, can I not? And, just knowing that there's someone who can explain it in their own language, it does and has made a difference.
Shelley Moore:So I wanted to ask you both, you know, from your perspective and using this as a as a platform to, you know, speak to a broader audience than just a single phone call, but what do you wish potential participants knew about the research process from your perspective and how you deal with folks?
Belinda J. Gonzalez:I would say to not be afraid to participate, to not be afraid to ask questions before you decide to participate. I think that among a lot of communities that it's not common to participate. You're contributing with your time and, you know, you're volunteering into this effort, one can make the difference. And so, just don't be afraid of reaching out. There is a group here that is willing and available, to help.
Belinda J. Gonzalez:And I think once you do, you do it, you will see how, how fulfilling it is to people. Like I mentioned earlier, we have repeat, participants, so it's a mutual, wind, I would say. I would just encourage everyone and anyone who knows someone who can, you know, participate to do so. People may resist entering clinical trials because they don't want to be
Dr. Mindy Aisen:a guinea pig or they're worried about safety or they think, you know, something's so experimental. Why should they put that in their bodies? I'd want people to know that you don't have to take a medication to be part of our trials. And some of our trials are simply sign up with us, take our cognitive tests, stay involved with us, learn about what we're doing so that there's an opportunity to be involved with us and just get information really, and just continue to monitor your own memory with our memory tests. I would also want people to know that by the time medication is selected by ATRI, it has gone through so many reviews and panels with the best minds in medicine anywhere.
Dr. Mindy Aisen:Mayo Clinic, Harvard, international experts are looking at so many different medications, and they're looking at what these medications do, what they've done in all different kinds of models of the brain, what the safety profile really is. The FDA is very, very careful about allowing us to move forward with anything and looking at the risk benefit ratio. There are other kinds of benefits, just access to people with deep knowledge about their underlying disease, and they may get medical care that they may not have been able to get because of where they're located or the doctor that they knew personally, etcetera. So there are untold benefits to just participating. And finally, even if it doesn't benefit the individual, you are benefiting your children, the next generation.
Dr. Mindy Aisen:And I will say that I've met people who've said exactly that, that it didn't help them or their loved one personally, but they now see that based on trials they participated in, medicines have changed dramatically in a matter of a few years.
Shelley Moore:So reflecting on that, do you have a success story? Is there something you're most proud of so far with this this work that you're doing in participant support?
Dr. Mindy Aisen:If we're talking directly about our participant support group in the call center, when we were very, very new. I mean, was probably, you know, a matter of weeks to months that the people had been working there, and we did our first outreach blood drawing event where we really didn't know if the plasma test was gonna be as accurate as it's starting to look like it is.
Belinda J. Gonzalez:Yes, I think that for I was going to mention the event that we participated in. For specifically what Mindy was mentioning, we were also the ones who helped, sign up in the live event. So we are, we were not only the ones answering the phone and calling them back with the results, we also had the opportunity as a very young call center team to be able to enroll them in person. And, you know, as part of the outreach and engagement team, which is, you know, we are here right now, Shelley and Mindy and I, with, you know, my team, we were able to meet people in person, which we loved. It's not very common that a call center team per se meets people face to face.
Belinda J. Gonzalez:We are a part of a school, of an institute, right? And live events and reaching out to the community is part of our responsibility, even if it's at an event, behind a table. And so I think I am very proud of the team for them doing that part and of enrolling people later when we got to call them with the results. They knew who they were talking to. Oh, I remember you from the event.
Belinda J. Gonzalez:And I think just having that possibility. The team asked me, when will we have the next event? They, they, once they were, they done it, they want to, you know, they were hooked. They're people people. I tell them Indi all the time.
Belinda J. Gonzalez:And they can put themselves in other people's shoes, they, they want to make everyone feel comfortable. We have to go the extra mile to get you the information that you need.
Mickenzie Vought:Yeah. How cool to get to meet the person that you are talking to. Oh, that's so exciting. So as we're winding out this interview, something that we've been asking in all of our interviews is as ATRI celebrates this ten year anniversary, what are your hopes for the institute's future and for the future of Alzheimer's research?
Dr. Mindy Aisen:Well, you know, as we celebrate ten years and we look to the next ten years, I think that research is going to become more centralized. That doesn't mean that all of our partners locally are not gonna remain our partners locally because wherever people live, they need to see doctors and nurses to get their care and get their medications and get their tests. But I think we're gonna be able to gather the data more readily centrally. We'll keep the blood specimens centrally. It will make the research better, more accurate.
Dr. Mindy Aisen:It will make answers come faster, which is what we desperately need because the quicker we get the right group of people enrolled and through the trials, the quicker we get answers and the quicker we can figure out the best way to treat this disease earlier and earlier and earlier until we have primary prevention, which is our goal. So I see the call center taking a role in terms of, not only answering questions or directing questions, but also helping to order tests for people, really kind of manage their care in conjunction with their local, teams, but having everything centralized to make life easier and more accurate for all of our partners around the world.
Mickenzie Vought:That's a great answer. Thank you so much. I'm excited to see that come to fruition. What about you, Belinda?
Belinda J. Gonzalez:Well, me too. And so excited to support that mission. We move forward, what I would like to see is for us to be able to reach more people, you know, have that increase in participants, you know, the trust of all the outreach that we do, the trust of family members, caregivers, participants. And, for us to be able to give them, you know, that world class service that they deserve throughout the process prior to getting into the trials, during events, during any surveys that we do. Just see a lot more participation externally and internally.
Belinda J. Gonzalez:Listening to the participants' feedback, I think, is super important. Having that trust, you know, from everyone who would like to join because it will make a difference. My hope is that my team can give that world class support and that we grow with along with ATRI's growth in the next ten years.
Mickenzie Vought:And I love how you're creating a space for participants to give their feedback and that I hear, that there is support from the entire team to respond to that feedback and to do something with it. And so that must be just a a rewarding feeling to know that you're on the front lines and able to take that in and know that it will go somewhere and that it will have an impact. So incredible. Thank you so much, both of you, for this conversation. It's been so enlightening, and I just continue to be awestruck by the heart and the passion and the knowledge and the expertise and just the grit behind the entire ATRI team as you guys work to find a prevention and a cure for Alzheimer's in the next ten years.
Shelley Moore:Thank you. Yeah. So the best way to engage with our, ATRI participant support team is by visiting our website at atri.usc.edu, and we hope to see you there. Thank you so much for joining us, and thank you, Mindy and Belinda, for this fabulous conversation and sharing what you do. Thank you for all you bring to the team and the work, and I know it comes across to everybody you get to, engage with on behalf of ATRI.
Shelley Moore:So thank you.
Belinda J. Gonzalez:Thank you, ladies.
Shelley Moore:Thanks for listening today. If you'd like more information, please visit us at atri.usc.edu. Thank you.