Podcast – ARUK Conference Roundup

Voice Over:

Welcome to the NIHR Dementia Research podcast, brought to you by dementia.researcher.nhir.ac.uk, in association with Alzheimer’s Research UK, and Alzheimer’s Society, supporting early career dementia researchers across the world.

Dr Yvonne Couch:

Hello. My name is doctor Yvonne Couch and I’m an Alzheimer’s research UK fellow at the University of Oxford, and I’m excited to be taking a turn at hosting the Dementia Researcher podcast. Thank you all for tuning in for this week’s two part special, discussing the 2021 Alzheimer’s Research UK conference, which took place virtually this year. We recorded part one earlier this week, where I was pleased to be a panelist discussing the ECR day, and today I’m back joined by four new guests to discuss the science, the panel talks and the presentations from the week.

Dr Yvonne Couch:

This was my first specialist conference. I’m used to going to big ones that are just on neuroscience or glia, so it was a totally different experience, and I found the whole thing absolutely delightful. The balance of clinical research and fundamental science is awesome, and it was good to hear talks discussing everything from careers to the problems with clinical trials, to drug discovery and design.

Dr Yvonne Couch:

I’m delighted to be joined by four wonderful panelists today. We have Beth Eyre from the University of Sheffield, who you may know from her blogs on the Dementia Researcher website. We also welcome Dr. Lucy Russell, and Dr Aitana Sogorb Esteve, who are both research fellows at University College London, working in the dementia research center. Finally, Michelle Naessens, who’s currently a research assistant at the University of Cambridge at the Center for Frontotemporal Dementia.

Dr Yvonne Couch:

Hello, everyone, and thank you for joining. Before we start, I thought it would be worth mentioning that all of us are new to the show, so be patient with us. I know we have all listened, but it’s great to have a chance to take over and share what we’ve seen this week. First, let’s do some brief introductions and talk about what we were at the conference for. Aitana, I know you had a poster at the conference, so do you want to start?

Dr Aitana Sogorb Esteve:

Yes. Thank you for having me in this podcast. I’m a post doctoral researcher at UCL and I have a background in neuroscience and biology. Now, I am focused on FLIP biomarkers, especially in genetic frontotemporal dementia. While I had the poster for this conference that was focused on one of the aspects we look at the FLIP bio marker team in my lab, it is the inflammation in frontotemporal dementia. While my poster focused on chemical analysis in cerebral spinal fluid and plasma samples from some participants with primary progressive aphasias.

Dr Yvonne Couch:

Excellent. You must have really enjoyed the big bio marker session that we had the other day.

Dr Aitana Sogorb Esteve:

Yes, it was great.

Dr Yvonne Couch:

It’s good to see that there’s stuff that you’re interested in. When you turn up at a conference and everything is unrelated, it’s always a bit off putting. Beth, you’ve mentioned you were short on time to get some data to present, but do you want to tell us a little bit about your work and what brought you here?

Beth Eyre:

For sure. I was a bit of a lurker at the conference, which sounds a bit strange. I wanted to go to get a feel for what’s happening in the actual field at the moment. My background is actually psychology, and I’ve only just started to move into the neuroscience. That’s what my PhD is doing, it’s moving me over. I’m currently investigating a mechanism called neurovascular coupling. I’m looking at this mechanism in the brain in Alzheimer’s disease. To do that, we use preclinical models. Again, this is all completely new to me, but I really enjoyed the research so far. Obviously with the pandemic, using preclinical models, it took us a bit of time to age the models, and then obviously, the pandemic affected getting the data. When the abstract submissions were supposed to be due, I wasn’t finished with my data but I’ve started to collect a lot more so by next year I’ll definitely be able to have a poster there.

Dr Yvonne Couch:

A lurker is a great description. I was fully a lurker at this conference. I’ve got a friend, Chris Martin, who’s a neurovascular coupling person at Sheffield.

Beth Eyre:

He’s in the lab.

Dr Yvonne Couch:

I was going to say, I’m assuming you know each other.

Beth Eyre:

Yes.

Dr Yvonne Couch:

He’s a very lovely man, he taught me a lot of stuff during my PhD. Lucy, you had a poster in the frontotemporal dementia section. Can you give us a brief roundup of that?

Dr Lucy Russell:

Thank you very much for having me on the podcast today. My work is facing on genetic forms of frontotemporal dementia, along with Aitana. In this group of people, individuals have problems with their behavior and their language, instead of memory like in Alzheimer’s disease. Because it’s a particularly rare disorder, especially when you start to break it down into the different genetic causes, that’s expansions and C9orf72 genes and mutations in progranulin [inaudible 00:05:14]. We really need to tackle this on a global scale.

Dr Lucy Russell:

Part of my role as the post doc at UCL is working as the frontotemporal dementia prevention initiative coordinator. This is linking big research groups from across the world, together with pharmaceutical companies and consortium groups to promote clinical trials and try and help design the best type of clinical trials that we can do for the cohort. The poster was talking a little bit about that and some of the work that we’ve been doing on disease progression modeling in FTD, and comparing two of the main cohorts in FTD. That’s the Genetic Frontotemporal dementia Initiative in Europe and Canada, run by John [inaudible 00:06:02] at UCL, so all FTD in the US. It’s looking really exciting data, the two cohorts look very similar, and we can see that individuals with progranulin mutations are particularly progressing much quicker that the other genetic groups. There’s some really interesting and cool data coming out there.

Dr Yvonne Couch:

Excellent. It’s really nice to see these huge collaborative networks going on. I think that some of the panel discussions during the conference really emphasized the importance of actually getting patients from all over the place. I always feel that the niche patient cohorts we get in Oxford are people who are already keen to be involved in research and therefore their brains are not necessarily the same as the regular Joe, out in the street, who doesn’t care. I think getting a whole bunch of people from all sorts of places around the world is really important. Michelle, you told me prior to this that you just slightly ran out of time to make your own poster, but you did say you’re a coauthor on a poster with Alistair Perry. Do you want to tell us a little bit about that and about your work?

Michelle Naessens:

I’m a research assistant at University of Cambridge. I work in the Cambridge center for frontotemporal dementia and related disorders. The lab I work in is quite diverse and quite big. I’ve been involved on the GABA study and [inaudible 00:07:28] study, working on frontotemporal dementia and progressive supranuclear palsy to see, if we administer drugs like memantine or tiagabine, if their brain activation, looking at EEG and MEG, become more similar to controls or not. I thought that was really fascinating.

Michelle Naessens:

I work mostly on the EEG studies and MEG studies of frontotemporal dementia and progressive supranuclear palsy. I’m also involved in our PET studies where we look at inflammation markers, but also synaptic density in corticobasal syndrome and progressive supranuclear palsy. It’s been really nice getting to work with all these different patient cohorts and across all these different imaging modalities. I’m looking forward to learning more because my post will continue for another year. I finished my master’s at UCL and I did my dissertation in the same lab as Lucy, so it’s actually really nice to come across a familiar face.

Dr Yvonne Couch:

It’s all nice and very inbred but you’ll find that as you progress in science, especially if you find an area that you love, an area that you’re really interested in, you end up meeting the same people over and over again. Especially, when you meet old professors who have been around forever. They know everyone and so suddenly everyone you know knows everyone else. It’s very embarrassing. I thought it might be good to do some day by day highlights to make sure we cover everything. As I mentioned up top, we covered the ECR day in part one of this series, so scooch back and listen to that if you’d like highlights from there. We’ll start here with day one of the main conference where we talked a lot about novel drug design and information. Beth and Lucy, do you guys have some highlights from day one you’d like to talk about?

Dr Lucy Russell:

I think it was a great start to the conference, actually. The welcome introductions were really thought provoking and inspiring. I think the ARUK video really highlighted some of the challenges that we’ve all faced over the last year, with regards to the COVID pandemic, and how it’s been particularly difficult for those suffering from dementia. It’s also been really hard for us researchers too, access to the labs and even participant visits. As you’ve heard from some of the others, collecting this data has been really difficult. I think the video did a really great job of highlighting some of the achievements that we’ve made so far this year. It’s moments like this that we can all take some time to reflect on what we have actually been able to do over the last year, and to keep us motivated with our work moving forward. For me, it was particularly motivating to hear [inaudible 00:10:10] talk about her own story and how her family coped with dementia.

Dr Lucy Russell:

Moving on to some of the other talks for the day, Mike O’Neill gave a great overview of the current status of clinical trials in AD. It’s great for me to learn how clinical trials are being run in Alzheimer’s disease, to help us move into the FTD field. As I mentioned earlier, that’s what I’m currently working on at moment so it’s really helpful to see what things are working and what things perhaps aren’t doing so well. I thought it was particularly exciting that the aducanumab trial is under review by the FDA and the European Medical Agency, despite the trial being stopped for futility back in 2019. Some of the other antibody style drugs, such as donanemab by Eli Lilly, also showing some promise.

Dr Lucy Russell:

I thought it was particularly interesting, looking at these two different trials here, because of the difference in eligibility criteria. The second trial by Eli Lilly really moved away from the clinical dementia rating scale as the primary outcome measure, to a more integrated and specific scale that might actually be better for measuring changes in clinical presentation for the primary outcome measure. I think that’s really important to take away for all other studies, really thinking about which assessment tools with should be using in these clinical trials and also thinking about the actual design of the trial as well, and the inclusion criteria for participants. Finally, with relation to my work in FTD, Mike also talked about some of the tau pathology trials in AD and other neurodegenerative disorders, such as progressive supranuclear palsy and FTD.

Dr Lucy Russell:

He was talking about a number of ways which we might be able to prevent the accumulation of tau. This could be through the inhibition of tau expression or even by targeting post translation modifications of tau, just to name few. He discussed the use of small molecule therapies and antibodies, as well as briefly touching on some anti[inaudible 00:12:28] nucleotide and gene therapies. Again, which is particularly pertinent to the world of FTD. I think it’s really exciting that we’ve got all these different trials going on. Whilst we do have some failures along the way, I think we’re learning from these all the time. We really can take from these and move forward and hopefully we will have something useful in the next year or two. Mike gave a really great overview of where the field is at the moment and it was a really great way to start the conference.

Dr Yvonne Couch:

There was some disappointing news with the Huntington’s trial, but there were still a lot of positive messages in there that suggested that we can definitely go forward and make some progress in this area. Beth, what did you enjoy about day one?

Beth Eyre:

To add to what you’ve just said, I really liked hearing about the clinical trials because it’s not something I focus on too much because I am preclinical work. I really appreciated when… I think it was Mike, I’m not too sure, said how important the data collection at the preclinical stage is, because that’s the sort of data that allows us to progress to these actual clinical trials in humans. I really appreciated that and that’s something I’ll definitely take forward with my own research.

Beth Eyre:

The second part of day one was all about the prizes. The first two talks were from Dr. Sophie Bradley and assistant professor Renzo Mancuso. They were both awarded the David Hague Early Career Investigator of the Year Award. This is usually given to one person but I don’t think they could choose this year. It’s worth £25,000 in research expenses, and they get a personal prize of £1,500. I think they said that they shared the prize this year. It’s presented to the most outstanding early career researcher in the field of biomedical dementia research with less than 10 years experience, post PhD, so congratulations to those two.

Beth Eyre:

Sophie gave us a bit of an insight about her career so far and some of the work she’s currently doing. Her and her team are investigating the G protein-coupled receptor superfamily. Their aim is to try and find potential new therapies for Alzheimer’s disease through this G protein-coupled receptor superfamily. The recent work that she spoke about is focused on determining how they can achieve these disease modifying effects, and the results look really promising. I think they’re using prion mice, and they used a M1 positive allosteric modulator. The results suggest that by targeting this receptor it can actually protect against the damaging changes seen in these prion disease mice. I think that’s really exciting for the field. It’s not my background, but the way that she did the talk allowed it to be quite accessible to me, which was really good.

Beth Eyre:

The second talk was by Renzo. This focused on his research and that’s using xenotransplantation models to study human microglia biology in Alzheimer’s disease. Again, his talk focused on some of the work him and his lab have been doing. They’ve developed a new method, this is the xenotransplantation. It’s a new method to allow them to study microglia and the genotype, phenotype interactions in Alzheimer’s disease and these other brain disorders. Again, not my research area but I did find what they were doing fascinating. Some of the stuff that people can do now is genuinely… wow. I think science is moving on and moving on. Things that we’re going to be able to do in future is really exciting.

Beth Eyre:

The final talk was form an early career researcher, Emma Jones, who was awarded the Jean Corson prize for the best scientific paper in neurodegeneration research which was published by either a PhD or an MD PhD student. Her talk was about the paper. The title of the paper was Identification of a Novel Risk Loci and Causal Insights for Sporadic Creutzfeldt–Jakob Disease: A Genome-Wide Association Study. Herself and the group she’s in, they did a genome-wide association study and found 41 genome-wide significant single nucleotide polymorphisms, also known as SNPs, which I learned at the conference. They were able to independently replicate these findings at three loci, associated with sporadic Creutzfeldt–Jakob disease.

Beth Eyre:

Basically, they were saying in the paper that this is the first evidence we’ve been able to statistically see these robust genetic associations in this human prion disease, which implicate intracellular trafficking and some other mechanisms. I think that was really exciting. Again, not my field, but the way Emma was able to do her talk did allow it to be really accessible for something that is so complex.

Dr Yvonne Couch:

It’s definitely a skill and I think being able to present something that is potentially inaccessible, is difficult. At the other end of the spectrum, I went to a presentation on a topic at some point a couple years ago which I fully expected to be really boring, but the guy made it so interesting. You end up suddenly getting sucked in a going, “Maybe I could do this,” and then you’ve got eight more research ideas which you really don’t have time for. Good, so that was day one. Day one was brilliant.

Dr Yvonne Couch:

Let’s move on to day two. Day two was much more clinical, so I’m going to start with a basic discussion type question for, specifically, Lucy and Aitana. Although, Michelle, you feel free to jump in on this as well because I know you work with people. You guys work at a large dementia research center and you work closely with clinicians. I do not like the term basic researcher, I’m very against that, but as fundamental researchers, how do you find that working relationship with clinicians?

Dr Aitana Sogorb Esteve:

For me, I joined less than a year ago this group and the DRC. It’s been a great experience because you have a very different point of view and I’m [inaudible 00:19:08] learning a lot. In the case of frontotemporal dementia, about the cognitive, the clinical, and also the imaging. I think that it’s great because you create two way feedback from the basic part to the more clinical part. I think that’s a very good thing to work with because you take into account very different point of views and you can integrate it. I think then you have a better picture of what you are looking at.

Dr Lucy Russell:

I agree, it really makes you question every idea that you have. How does it impact the patient? How does it help on an every day basis? I think we’ll come onto it later, but there was the sensory session looking at problems with vision and hearing. Those are the things that the patients have problem with on a daily basis and those are the things that can make a huge difference. I think sometimes it’s quite difficult to see that when we’re so focused on our own particular projects. We get our heads down in our books and our papers and sometimes, working with the clinicians gives you that ability to take a step back and see the bigger picture and question why what you’re doing is actually going to help. You get to see patients, you get to work with them and hear their stories and go to support groups and do all those things that perhaps you wouldn’t get to do if you weren’t working with them.

Dr Aitana Sogorb Esteve:

The support group thing is something very new for me and very useful because I’ve always been working in the lab and I only receive a [inaudible 00:20:56] with something, and then I work with that. I never see from where it comes and what is happening, what is the real life story of that. It’s really good.

Dr Yvonne Couch:

Definitely. Michelle, do you want to add something?

Michelle Naessens:

I completely agree with that as well. I get to go to memory clinics as well to get to see how it actually impacts the patients, how it impacts their loved ones and their carers because they sit in during these meetings. You just see their face go really sad when they underperform on a cognitive task [inaudible 00:21:33]. It shows you how relevant it is to do research but we also, most of our clinical trials, focus on clinical trials and treating the disease. In this next session, Craig Richie also mentioned that we should look at symptomatic treatment and actually do trials on those. His treatment for the disease is amazing but it’s so far ahead in the future still that we should also look at how we can actually maintain the quality of life of the patients that have the disease right now.

Dr Yvonne Couch:

That’s definitely really important. It is something that’s coming in, in a lot of fields. My background is stroke and the issue we have in the stroke field is people have tended towards, almost in the same way that they’ve done in the dementia field, you look at the brain. Is your intervention fixing something in the brain? In the case of dementia, is it reducing amyloid, is it reducing tau? If it is, then it must be great, and it’s the same with stroke. Is it making the infarct volume smaller? Actually, the field’s moving away from that now to saying, “Actually, are the functional outcomes there?”

Dr Yvonne Couch:

So, in terms of preclinical research, if you’ve given an animal a stroke, can it walk better after your intervention? Can it use its limbs better after your intervention? That kind of stuff, like you say, in dementia is really important because it is all about getting the person’s quality of life back. That leads us really well onto the big panel discussion they had on day two about clinical trials. Michelle, you just briefly touched on it there. Do you want to give us a bit more information on the sorts of things that they discussed?

Michelle Naessens:

That clinical trial session was absolutely fascinating to me. What I really liked about it was the need for representation in research. I think Lucy knows that [inaudible 00:23:23]. The patients we recruit from our studies get recruited from specialized clinics, so our movement disorder clinic or a memory clinic. Those people presenting to these clinics are already a biased group, let alone those that then go on to go into research or even clinical trials. When you look at our FTD cohort, these people tend to be highly educated from a high socioeconomic status, and they also tend to be white. That is not representative for the whole UK population or the patient groups in general. I think that is really important to look at.

Michelle Naessens:

When you look at our research, I conduct research in Cambridge and of course that can never be representative of the whole UK because Cambridge is a special place in and of itself. I think that it’s really important to take into account where you’re doing research. Both Cambridge and Oxford, they’re very special places, even though we’re rivals. We will have biased patient groups in our research, so that is very important to take into account when you’re doing clinical trials.

Michelle Naessens:

I think Craig Richie, again, he mentions an opt-out system for research, same as you do with organ donation, which would be really good. That also depends on those people already presenting to the specialized clinics. The joint dementia research is a really great platform for that but I think we should also work in the community and go to these people. Once again, those people that go on these sites, they are a bias group, so I think there’s so many more things we should take into account.

Dr Yvonne Couch:

Very much so. It’s something that we have a problem with preclinically. We almost do the same thing. We do all of our experiments on young, healthy male mice, and that’s just not what any of this is about. These are all aged populations, they’re mixed, they have comorbidities. We have to link it up all the way throughout the field. We have to get our preclinical research populations appropriately mixed and then we have to get our clinical populations appropriately mixed if we’re ever going to think about translating any of this stuff.

Beth Eyre:

I completely agree. Sorry to interject, but I completely get that, especially from being at the preclinical level. A lot of the labs, like you said, just use male mice. I’ve said I wanted to use male and female mice because dementia also affects women. It’s the same for the clinical trials, a lot of the data is from males and how can we use the data from the clinical trials if there’s not the right gender split. Again, same with economic status and ethnicity and things like that, it is really important to get that representativeness. You mentioned about comorbidities, most people who have the symptoms that are dementia, it’s not just one thing that’s causing them, it’s one or two things. In our lab we also research comorbidities, so we have Alzheimer’s and we induce atherosclerosis as well to look at the links between Alzheimer’s and heart disease, that sort of thing.

Dr Yvonne Couch:

Yeah, and having these platforms where you can access different patient cohorts, like Lucy was talking about at the beginning, I think are going to be really important going forwards. In terms of big networks, we also on day two briefly discussed, the EDoN platform, which for those who don’t know is the Early Detection of Neurodegeneration Initiative. They have website, go check it out if you’re interested at edoninitiative.org. Beth, I’m wondering whether you could give us a brief round up of what the EDoN initiative is and why it’s important.

Beth Eyre:

The EDoN, or the Early Detection of Neurodegenerative Diseases is a really exciting project. Their overall aim is to detect these neurodegenerative diseases way before we see the symptoms. With things that cause dementia, with the diseases that cause dementia, you see the symptoms when the disease is really quite progressed. Obviously, the point of this is to interject early, which could potentially stop people having the symptoms which really do affect an individual’s life. If this works, it could be really life changing. The whole point is they’ve got together a big group, it’s a big collaborative project globally.

Beth Eyre:

They have data scientists and digital technology scientists, clinicians, and they’re all working together to create a digital tool that includes wearable technology and smartphones that potentially could help with the detection of these neurodegenerative diseases. The point of this digital tool is that they want to collect vast amounts of data and then try and link these with clinical tests, such as brain scans, in order to see if there’s digital patterns, like a fingerprint, to see if they can identify fingerprints in different neurodegenerative diseases. Like I mentioned, if this does work it’s really exciting because it could really change people’s lives.

Dr Yvonne Couch:

Again, it’s all about catching stuff early and having that huge network of available people. With so many neurodegenerative diseases, Alzheimer’s, Parkinson’s, you don’t catch it until you’ve already got it. These kinds of studies are so important. One of my favorite ones is not Alzheimer’s related, it’s the woman who can smell Parkinson’s. Still officially my favorite paper ever. On the third day, which we’ll move onto now, we saw some heavy hitting and timely topics coming up. Starting with some work on the influence of viruses on dementia, particularly important this year, and we followed up with some work on biomarker discovery.

Dr Yvonne Couch:

I’m going to leap in because for me, the work of Colm Cunningham is always a pleasure to see. He’s interested in peripheral inflammation and how that affects the brain, and some communication pathways between the brain and the periphery. He uses some very elegant models and he just always presents his work very beautifully. I love Colm, so that’s my highlight from day three. Aitana, is there anything you really enjoyed about the viral sessions?

Dr Aitana Sogorb Esteve:

I think Colm’s talk was particularly interesting. I think while inflammation is a topic that increasingly has more importance in dementia, there are increasing evidences that microglia plays a crucial role. From Colm’s talk is that the systemic inflammation can also affect the brain because it’s something systemic. I particularly found the first talk from Clayton Wiley very informative. There was a couple of things that I didn’t know about this relation between dementia and viral infection. A couple of things that were commented in that talk is that there is not a real relation between infections and dementia.

Dr Aitana Sogorb Esteve:

From the literature, it seems that just the fact of the aging to have an old immune system, that is something that can be a risk for developing something more after viral infection. Two more things that shocked me is that there was a fact that aerosol transmitted virus, they can affect more just the neuro system because they are transmitted by the air. The immune system cannot tackle them properly or better than other infections. Another thing that was commenting, this was just a hypothesis that was discussed in the questions. It was the theory that maybe the microglia activates the synaptic [inaudible 00:32:01] to avoid the transmission of the virus from cell to cell. That’s something I have never thought about it. I think it’s a very interesting topic and very interesting theory.

Dr Aitana Sogorb Esteve:

Then, the session about the COVID-19 was very interesting for the times that we have now. Just the fact that markers found viral particles in the [inaudible 00:32:33] nerve, it was very shocking for me. Then of course, there is this increasing evidence unmentioned before and that was something that [inaudible 00:32:47] explained in his talk about the gene association with Alzheimer disease and this COVID-19 [inaudible 00:32:59] people. I think it was all very interesting and on topic now.

Dr Yvonne Couch:

Definitely. There was one bit of that session where I had to look stuff… genetics is not my field at all. There was something about quantitative trait, I’m going to go with Beth’s version, which was loci, but it could be loci, I’m never sure how to say that word. That, I had to look up and I was like, “Ooh, you can get different amounts of mRNA expression. Different people can have different amounts. This is so cool.” I feel that’s very first year undergrad genetics which I was either asleep for or I’m so old that it was discovered after I did my undergrad.

Dr Yvonne Couch:

That kind of stuff, where they were looking at the severity of SARS and the genes that are expressed and how that might relate to aging, I thought it was fascinating. The fact that you can potentially have viruses repeatedly throughout your life and this might affect how you age, which makes me a bit paranoid about taking public transport but I don’t think there’s anything we can do about that. Michelle, you use MRI as a way of looking at dementia, but do you think combining it with other biomarker studies would be useful? Was there anything from the biomarker aspect of the day that you thought was particularly inspiring?

Michelle Naessens:

You can’t do research without pooling your data from different types of biomarkers. I love MRI, it’s the imaging method I have most experience with, but there’s only so much you can tell with it. Like Nick Fox said during his presentation, MRI is great for diagnoses. If there’s atrophy of the hippocampus, you can quite confidently say that this person has Alzheimer’s. If there’s amyloid deposition in certain part of the brain in a PET scan, you can also say that person has Alzheimer’s. It’s a quite static marker so you can’t discern small changes over time. It will never be able to tell you if your treatments are successful if there is a trial happening. I think what is very important is to look at markers that are dynamic that can detect these little things that we change.

Michelle Naessens:

Block biomarkers or CSF biomarkers would be great because they’re quite easily obtained, you can [inaudible 00:35:18] them multiple times without really having an effect on the patient. If you do a PET scan, that’s radioactive so there’s only so many scans you can do and they’re quite costly as well. If you take block biomarkers, you can analyze a lot of them in one go and it’s quite cheap. What I thought was really interesting was the salivary biomarkers. I knew that a lot of labs took saliva from their patients but I didn’t know how they analyze them or what defined how far the field had progressed in that regard, I think that will be amazing as a dynamic marker of change.

Michelle Naessens:

It will be really great for a patient as well because they can just take their own saliva and then send it off in a post box even. They don’t have to come into clinic, quite similar to an at home COVID test. Just put it in a post box and go on with their life. Additionally, I thought the digital biomarkers were really interesting, tying it in with the EDoN network. I thought the in-ear EEG analysis was really amazing. I didn’t even think that was possible, so it really blew my mind.

Dr Yvonne Couch:

[crosstalk 00:36:32] something like that that existed. Compared to the sleep headwear that they were suggesting, which is a brilliant idea in concept but in reality I’m not sure it would work that well, particularly when you think of behavior in FTD patients. There no way they’re going to keep that on their head for a night whereas, those little in-ear EEGs were incredible.

Michelle Naessens:

It really blew my mind that that was even possible. How do you even come up with that idea? There’s so many things happening nowadays and technology’s advanced so quickly. There’s so many people out there in the field that are just so incredibly smart, developing these technologies, developing these methods, it just gives me so much hope for the future. If we can pool this all together, these different technologies, different methods, different biomarkers, and working across different studies, different centers, different countries, I think the sky really is the limit.

Dr Yvonne Couch:

Like you say, behind some of those techniques that are just so snazzy, like that in-ear EEG business, really will help with patient recruitment. People don’t like hospitals. If they don’t have to come into a hospital or they don’t have to come into a funky study center and sit in a clinical waiting room when they’ve got dementia and that’s going to make them uncomfortable and they’re going to get anxious, that might affect your design. If you can get them in their natural environment then it’s so much easier. Aitana, you work on bio markers, did you enjoy that session as well?

Dr Aitana Sogorb Esteve:

It was great. It has been lately a lot of updates on the fluid biomarker field as well, so I think [Hendrick’s 00:38:13] talk was great. Mainly on this blood biomarker, blood [inaudible 00:38:19] because the problem is that blood is not being an easy fluid to find biomarkers. For dementia you need to find things that reflect the state of the brain and sometimes the concentration of those biomarkers in blood is very low that you cannot detect it with any technique. The research is now focused on that and I think there are very good improvements and developments in that.

Dr Yvonne Couch:

Yeah, like Michelle says, if we just all pool together and really focus our efforts, I think spectacular stuff could happen. Finally, we’ll move onto day four where we had some important talks on protein misfolding. I’m going to steal the stage a bit here and talk about Dr. Rachel Waller’s talk from the first session, which was on the development of dementia post stroke, which is my field of fun. She was using the CogFAST cohort, which is a clinical cohort. It’s run by Raj Kalaria in Newcastle.

Dr Yvonne Couch:

What she was doing is she’s taking post mortem tissue and she was using laser capture microdissection, which I think is a beautiful and slightly underused technique. She was taking out endothelial cells and astrocytes and neurons and then she was doing microarrays on each cell type. What she found was that she got this fundamental breakdown of the neurovascular unit but this was at a site that was distant from the stroke. For me, that’s one of the important things about vascular dementia after stroke, is that your stroke often happens in the back slash middle of your brain.

Dr Yvonne Couch:

You can have all these vascular changes that happen distant from this site and there doesn’t seem to be any link between the size of the stroke or where the stroke is, in terms of who is developing vascular dementia and who isn’t. Something else has clearly got to be going on and I thought that Rachel really started to pin down some of what was going on there. I thought her research was really fascinating. Then, we had the neurosensory section. Lucy, can I come to you and ask whether there was anything from that, that you found particularly fascinating?

Dr Lucy Russell:

Particularly, the first two talks of the session. The one by [Myam 00:40:32] and the other one by Jason [Moran 00:40:33] were particularly interesting, looking at these things that affecting the patient’s every day life. The first one was about using the retina to predict status of Alzheimer’s disease. She was talking about how we can find changes in the retina very early on in the disease. We can be looking at things like tau and amyloid within the retina, using relatively cheap imaging tools and it could be an alternative way to pick up these things in everyday life, if you went to Specsavers for your eye test or something. It could end up being something that’s actually a practical tool and a screen in the clinical setting that could be useful very early on.

Dr Lucy Russell:

This is iterated in Jason’s talk afterwards, around hearing and developing a hearing screen that could be used in clinics to pick up these early changes. He was talking about some of these difficulties that often individuals with Alzheimer’s disease say that they have, in terms of getting lost in social situations and this background noise taking over and making it very difficult to focus on the conversation that’s at hand. They’ve done a variety of different tasks in hearing, from peripheral hearing problems and musical hearing. He kept referring to the cocktail party effect, like I spoke about before. These sorts of things can be really useful down the line. I think they were fascinating talks and something that definitely need exploring further to see what utility they can have in everyday life to pick up these diagnoses earlier.

Dr Yvonne Couch:

It harps back to being able to recruit more people at easily accessible places. Everybody has eye tests and loads of old people have hearing tests. If you can catch them there, that is nothing but a good thing. I know that we’re short on time but it was a digital conference, it was a virtual conference, and I personally thought the platform was really interesting. I wanted to ask you guys what you thought about it. Beth, should we start with you?

Beth Eyre:

I quite liked it actually. This is my first proper virtual conference, I’ve not really had any experience with the others and I haven’t really been to any real conferences before. I have nothing really to compare things to, so I guess that’s quite good. I thought it was really accessible, I liked that you could chat to other delegates and I had a couple of conversations with people. I really liked the on-demand section afterwards, so if you did miss a talk, because I had to miss one or two because of things I couldn’t get out of, it’s nice to know that it’s still there and I can go and catch up on it.

Dr Yvonne Couch:

Definitely. Michelle, you’re going to be relatively new at this whole conference game because you’re much earlier in your career than all us old people. How did you find the platform?

Michelle Naessens:

Really liked it. The setup was quite minimalistic so it was quite easy to find your way, find when things were being presented, where to find the posters. I went to AAIC in summer and I thought that platform was way more complicated to move across. I couldn’t really find things so I just chose to watch things on-demand, and I liked this a lot better. What I would have preferred to be there was close caption options to the videos. Maybe they are there but didn’t see them. I think that would hep accessibility.

Dr Yvonne Couch:

I only agree with you on that front, although I do occasionally find them distracting, especially when people have accents, when they start to mistranslate what they’re saying and then you get distracted looking at the funny sentences that are clearly not what the person just said. If it’s done well it’s really helpful. Lucy and Aitana, have you done many virtual conferences over the last year? How did you find this compared to the ones you’ve already done?

Dr Lucy Russell:

We’ve been to a few. I thought it was very good on a whole. I thought in general the platform ran well. I did have a few issues with it freezing, I don’t know if other people did on the live videos.

Dr Yvonne Couch:

Definitely, repeatedly.

Dr Lucy Russell:

[crosstalk 00:45:17] frustrating, but it was a quick fix, refreshed the screen and then it was back. In my old age I would have perhaps liked a PDF of the agenda. I liked the interactive style of the agenda and where you could bookmark the sessions that you liked, but when I first got into the conference at the start, I just wanted to have a quick glimpse through what was on and the clicking between the pages. It was a minor thing, it worked perfectly well, but that would have been the only thing I would have liked.

Dr Yvonne Couch:

Aitana, how did you find it?

Dr Aitana Sogorb Esteve:

I agree with Lucy, it was great. I really liked the way that you go to the day and you can see all day and you click and you’re linked directly to the talk. I missed maybe a PDF agenda as well. Also, one thing that have driven me a bit crazy is the poster notifications, so if you got any comment, you have to tag your poster. Maybe it’s something that only happened to me but I couldn’t get any notifications that people was asking me things in the poster and I had to check every time. For the rest I think it was really good.

Dr Yvonne Couch:

It was a nice platform. Lucy, you’ve got something to say.

Dr Lucy Russell:

Another thing I really appreciated, and thank you ARUK for doing it, is the breaks. I have been to a number of virtual conferences that have slammed you from five hours at a time without a break. I really did appreciate that, so thank you very much.

Dr Yvonne Couch:

We’ve got lots of nodding from all the other panel members. I went to one earlier in the summer where they did flash presentations. Don’t get me wrong, I love a flash presentation but these were all five minute talks. They’d done it poster style so you could barely see anything, and they did about 15 of them in one go. When I got to about seven, I was like, “I don’t know what’s going on. My brain hurts.”

Dr Yvonne Couch:

So, repeated breaks and the fact that they were half days so that you could spend the other half of the day doing science or childcare or looking after your cats, in the case of Selena, whose cat repeatedly pops up on Twitter, which I love. It was a really nice layout. As a new person, I really enjoyed the disturbing dating app style matching. I found someone who was doing stroke and vascular dementia and inflammation. I was like, “Ooh, let’s be friends.” It was really childish. Michelle, did you want to leap in?

Michelle Naessens:

Yeah. There’s another thing I really liked was that the on-demand session was available next day. Some conferences, they wait until the whole conference is done, but especially since it was only a half day, I could just choose to watch things back the next day, which was really nice.

Dr Yvonne Couch:

There was plenty of space, which was lovely. Thank you everyone for sharing your thoughts. If you attended the conference and missed those talks, we hope you can seek them out and watch them on catch up. If you didn’t book and can’t access those presentations, I hope our summaries today were interesting. If you check out Twitter with the hashtag ARUKconf21, you will find plenty of chat about the week. Before we finish, I’m going to let all of our panelists give a plug to anything they might want to. Let’s start with Beth, I know you’ve got a podcast and Instagram going, so do you want to plug them?

Beth Eyre:

Yeah. If you want to hear about my experiences as a PhD student and some of the research that I do, you can follow me on Twitter and on Instagram, which is where I do most of my science communication. That is @bethsbrainbites. I also have a podcast, the podcast is called Honest Academia. You can find it on Apple or on Spotify, or on other places you get your podcasts. Myself and my friend Mel, we talk about the experiences of navigating academia as first generation PhD students.

Dr Yvonne Couch:

Excellent, thank you very much. Lucy, you’ve mentioned to me that you’ve got a student working on something similar to the EDoN project. If you gives as a bit of a run down on that, then Aitana can run through your social media and the FTD talks website stuff.

Dr Lucy Russell:

One of the students that I happen to supervise, [inaudible 00:49:47], she’s doing a program very similar to EDoN, but in frontotemporal dementia. Its also called The Early Detection of Frontotemporal Dementia, or known as EDoF, and you can find her poster if you’re at ARUK in the frontotemporal dementia session. It was number 4.8. As part of this project, she has an iPad app called Ignite, that’s I-G-N-I-T-E, and she’s currently validating this in the general population.

Dr Lucy Russell:

So far, she’s done really well, managed to collect data from people aged 20-80 and is hoping to get 100 men and 100 women from each decade. At the minute, she’s recruited just over 1,500 people which is an amazing achievement, but she hasn’t quite got enough individuals under 50 to have taken part in it. The app’s made up of a few fun, short activities, like brain training games and it really doesn’t take very long to complete. If anybody would like to help, please download the Ignite app from the Apple app store, or you can check out the website, www.igniteftd.com. You also can find her on Twitter at EDoF.

Dr Yvonne Couch:

Perfect, thank you. Aitana, do you want to give us a run down of your stuff?

Dr Aitana Sogorb Esteve:

Both Lucy and me are part of the FTD talk team at UCL, and in our hands is the public engagement and raise awareness about genetic FTD and FTD. We have a website, it’s FTDtalk.org, and there we have some useful information about FTD, about our research. We also have a blog in which we upload our latest research and some interesting posts. Then, we also have a Twitter account, and Instagram page and a Facebook page. All of them FTDtalk, so if you follow us we post some information about FTD, genetic FTD, and our research.

Dr Yvonne Couch:

Brilliant, thank you ever so much. Michelle, you’re still relatively new. Do you have anything that you want to plug?

Michelle Naessens:

Nothing really majorly research related like the rest of you, but during lockdown I’ve really embraced my inner grandma and I’ve started embroidering. Since I don’t want to end up with loads of embroidery things, I decided to start fundraising for Alzheimer Research UK and Interscience. I have an Instagram page, michelleembroiders, and there you can ask for commissions or just buy pieces I have and half of the profits will go to Alzheimer research UK or Interscience UK.

Dr Yvonne Couch:

That is absolutely fabulous, well done on setting that up. As someone who is funded by Alzheimer’s Research UK, I would like to say thank you very much. It is beautiful that you’re doing that. It’s time to end today’s podcast recording. I would like to thank our panelists, Beth Eyre, Dr. Lucy Russell, Dr. Aitana Sogorb Esteve, Michelle Naessens. If everyone could say a big goodbye?

Michelle Naessens:

Bye.

Beth Eyre:

Bye.

Dr Lucy Russell:

See you.

Dr Yvonne Couch:

We have profiles on all of today’s panelists on the dementia research website, including details of their Twitter accounts. Thank you all for listening, the Dementia Researcher podcast is available on Spotify, Apple Podcasts, Stitcher, or wherever you get your podcasts from. Please remember to like, comment and subscribe, and keep science-ing everyone.

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