Latest / Dementia Researcher Vodcast / Relay Podcast - Down Syndrome and Alzheimer's Disease PIA

Transcript

Relay Podcast - Down Syndrome and Alzheimer's Disease PIA · Dementia Researcher Vodcast

• 0:00
  (light music)
• 0:02
  - [Moderator] Hello and welcome to season seven
• 0:04
  of the Dementia Researcher ISTAART Relay Podcast.
• 0:08
  In this series, members of the ISTAART's
• 0:11
  Professional Interest Areas interview each other
• 0:13
  about their PIAs and the hot topics in their fields.
• 0:18
  Each guest then becomes the next episode's host,
• 0:21
  passing the conversation along
• 0:22
  from one researcher to the next.
• 0:25
  We are releasing one episode a day
• 0:27
  in the run-up to the Alzheimer's Association
• 0:30
  International Conference this year in London and online,
• 0:34
  showcasing the work of the ISTAART PIAs.
• 0:37
  Thank you for listening.
• 0:45
  - Hello and thanks for tuning in.
• 0:47
  I'm Lillian Morgado, a research coordinator
• 0:50
  at Georgia State University in Atlanta, Georgia, USA.
• 0:54
  I'm also the Social Media and Communications Chair
• 0:57
  for the Health Policy PIA.
• 0:59
  Today, I'm delighted to be talking with Dr. Patrick Lao
• 1:02
  from the Down Syndrome and Alzheimer's Disease PIA.
• 1:06
  Hello, Patrick.
• 1:07
  Can I start by asking you to introduce yourself?
• 1:10
  - Hi, Lillian.
• 1:12
  Yeah, so I'm Patrick Lao.
• 1:13
  I'm an assistant professor at Columbia University.
• 1:16
  I'm the current Programmes Chair
• 1:18
  for the Down Syndrome-Associated Alzheimer's Disease PIA
• 1:21
  and the incoming Vice Chair.
• 1:23
  - Congratulations on your vice chairship.
• 1:26
  - Thank you.
• 1:27
  - And then before we talk about your work with the PIA,
• 1:30
  can you tell me a little bit about your own research?
• 1:33
  - Sure.
• 1:34
  So my background is in medical physics,
• 1:36
  and I do a lot of neuroimaging.
• 1:39
  Yep, so I use multimodal biomarkers
• 1:41
  to look at the disease course
• 1:43
  across different forms of Alzheimer's disease.
• 1:45
  So that includes genetic forms
• 1:48
  like Down syndrome-associated Alzheimer's disease
• 1:50
  or autosomal dominant Alzheimer's disease,
• 1:53
  as well as sporadic forms,
• 1:55
  so like late-onset Alzheimer's disease.
• 1:58
  And even within the different clinical presentations
• 2:01
  of Alzheimer's disease, there are certain subgroups
• 2:04
  like posterior cortical atrophy,
• 2:07
  where there's more visual-spatial impairment
• 2:09
  and more posterior involvement of brain regions,
• 2:13
  or logopenic variant primary progressive aphasia,
• 2:16
  where there's left temporal involvement
• 2:18
  that leads to language impairments.
• 2:21
  And so looking across all these different forms
• 2:24
  of Alzheimer's disease allows us to compare and contrast,
• 2:28
  see what pathways might be generalizable
• 2:31
  and essentially a target for therapy for everyone,
• 2:35
  or which pathways are specific to specific subtypes
• 2:40
  where more of a personalised approach might be warranted.
• 2:44
  And so by doing this work, we can use the unique aspects
• 2:48
  of each form of Alzheimer's disease
• 2:52
  to kinda gain new insight.
• 2:54
  So for example, adults with Down syndrome,
• 2:56
  they have Trisomy 21,
• 2:59
  which is the triplication of Chromosome 21,
• 3:02
  and that's where the amyloid
• 3:03
  precursor protein gene is encoded.
• 3:06
  So from birth, they're overproducing
• 3:09
  the amyloid precursor protein.
• 3:11
  And this is happening in every person with Down syndrome.
• 3:16
  And a lot of our work has shown,
• 3:19
  we've mapped out the amyloid cascade in these individuals,
• 3:23
  so starting from amyloid, going to tau,
• 3:25
  going to neurodegeneration,
• 3:27
  and finally, cognitive impairment.
• 3:30
  And since I do a lot of multimodal work,
• 3:32
  I've been really interested in incorporating
• 3:34
  vascular and inflammatory pathways into these cascades.
• 3:38
  And by doing so, several groups across the world
• 3:44
  working with cohorts of adults with Down syndrome
• 3:47
  have put out a lot of cross-sectional work
• 3:50
  and, more recently, longitudinal work,
• 3:53
  essentially showing that this happens
• 3:55
  in a very stereotypical pattern
• 3:57
  and we can use chronological age to essentially approximate
• 4:03
  disease progression in this population.
• 4:07
  And so now we're starting to characterise
• 4:10
  the timeline of the natural history of disease,
• 4:12
  and this will really help inform clinical trial design.
• 4:17
  - Okay, that is really cool.
• 4:19
  And I have some questions because this is,
• 4:22
  I mostly do qualitative research,
• 4:23
  so some of this is outside of my normal stuff.
• 4:26
  You had mentioned that you work
• 4:29
  in medical physics, I believe.
• 4:31
  Is that correct?
• 4:32
  - That's correct.
• 4:34
  - Okay.
• 4:34
  That sounds like a very niche field.
• 4:37
  Which side did you start on, the physics or the medicine?
• 4:41
  - Well, I did a dual degree
• 4:43
  in biology and physics in undergrad.
• 4:46
  And so they always kind of came hand in hand for me.
• 4:50
  I was originally thinking about going to medical school,
• 4:53
  and then I had heard about medical physics as an option,
• 4:57
  so then I ended up going that route.
• 4:59
  So yeah, I think it's simultaneous in this case. (chuckles)
• 5:04
  But yeah, it's essentially leveraging
• 5:06
  kind of the properties of radiation
• 5:10
  and how they interact with human tissue
• 5:13
  to generate either meaningful images
• 5:16
  or to treat things like cancer with radiation therapy.
• 5:21
  - Actually leads to my follow-up question.
• 5:22
  You had mentioned doing multimodal imaging,
• 5:26
  and I was curious what that means.
• 5:28
  Are we talking about looking at brain scans
• 5:32
  or tissue samples?
• 5:34
  What sort of images are you comparing?
• 5:37
  - Right, yeah, I guess multimodal could mean
• 5:39
  a whole host of different things
• 5:41
  depending on what type of biomarker.
• 5:43
  But since I normally do neuroimaging,
• 5:46
  I'm just talking about different brain scans.
• 5:48
  And so some of the ones that we use are amyloid PET scans.
• 5:54
  And this will show you how much amyloid is in your brain.
• 5:58
  And these are really useful
• 6:00
  for clinical trials right now that target amyloid.
• 6:06
  So all the anti-amyloid antibodies,
• 6:08
  to show eligibility for the study,
• 6:11
  a participant has to be amyloid-positive,
• 6:14
  and so they'll get a scan
• 6:15
  or a blood test prior to enrollment.
• 6:18
  And then after treatment with the drug,
• 6:20
  they're gonna scan them again to see
• 6:22
  if there was treatment-related amyloid clearance.
• 6:26
  And so imaging is the gold standard
• 6:28
  for this type of stuff just because we can get
• 6:30
  that spatial information
• 6:33
  that we're used to getting from autopsy.
• 6:37
  Whereas a blood measure
• 6:38
  will kind of just tell you a global burden of amyloid.
• 6:43
  And so in the amyloid cascade,
• 6:45
  after amyloid comes tau pathology.
• 6:48
  And so we have these tau PET scans.
• 6:51
  Only one of these tracers is FDA approved.
• 6:54
  The rest are still only for research.
• 6:57
  And so these methods are still being developed
• 6:59
  in terms of visual reads and quantification
• 7:03
  and harmonisation across tracers.
• 7:06
  But tau PET is really, really useful in showing
• 7:09
  how the tau pathology spreads across the brain.
• 7:13
  So for amyloid, it's more important how much you have
• 7:16
  in these Thal phase regions,
• 7:18
  which is kind of a global phenomenon.
• 7:20
  But for the Braak staging, it's really the tau spreading
• 7:24
  across the brain that gives you information
• 7:26
  about the progression of the disease.
• 7:30
  - Question. - Yeah.
• 7:31
  - What is Braak staging?
• 7:33
  - Sure, so I mentioned that PET imaging
• 7:37
  is sort of the gold standard because it relates to autopsy.
• 7:42
  And so autopsy is how we kind of definitively
• 7:45
  show pathology at end of life.
• 7:50
  And so while a person is alive, we can't do that.
• 7:53
  And so we have to use imaging biomarkers
• 7:55
  to kind of get a sense of that.
• 7:57
  And with the spatial information from imaging,
• 8:00
  it sort of maps onto autopsy best.
• 8:04
  And for amyloid, the spatiotemporal progression
• 8:08
  of amyloid plaques across the brain
• 8:10
  was first characterised by Dietmar Thal.
• 8:15
  And so we call those the Thal phases.
• 8:18
  And so those go from one to six.
• 8:22
  And then for tau tangle pathology across the brain,
• 8:26
  that was first characterised by Dr. Braak.
• 8:28
  And Braak, I think, is a husband-wife pair.
• 8:32
  And so Braak staging essentially describes
• 8:36
  the progression of tau across the brain
• 8:38
  from stages one to six.
• 8:41
  - Okay, thank you so much for clarifying that,
• 8:43
  'cause I was like, ooh, that sounds really important.
• 8:47
  So it sounds like imaging is really cool
• 8:50
  because it tells you where the biomarkers are deposited,
• 8:54
  whereas if you do a blood draw,
• 8:55
  it just says if they're there or not.
• 8:59
  And another thing you had mentioned
• 9:01
  was that through using this imaging technology,
• 9:05
  you're able to figure out the Alzheimer's disease staging
• 9:11
  for people with Down syndrome based on chronological age.
• 9:14
  So does that mean you can say,
• 9:17
  all right, when someone who has Down syndrome is,
• 9:21
  I don't know, 40 years old,
• 9:23
  we can expect this level of accumulation
• 9:25
  and they may need this level of support?
• 9:28
  - Right, I think that's the ultimate goal,
• 9:31
  to be able to place them on the disease timeline
• 9:34
  based on something as simple as chronological age
• 9:37
  in order to give guidelines to these individuals,
• 9:41
  their families, their caregivers, their clinicians,
• 9:43
  to know what to screen for at a particular stage of life.
• 9:47
  And when we start to look at these different
• 9:50
  genetic forms of Alzheimer's disease,
• 9:52
  I think it's been more widely studied
• 9:54
  in autosomal dominant AD, where there are mutations
• 9:58
  in the amyloid precursor protein,
• 10:00
  Presenilin 1 or Presenilin 2.
• 10:03
  But essentially, what comes out of that
• 10:04
  is a concept called estimated years to onset, or EYO.
• 10:10
  And this is how predictable their clinical symptom onset is
• 10:15
  based on their parent's symptom onset
• 10:18
  if they had that mutation.
• 10:20
  So for example, if someone has autosomal dominant AD
• 10:26
  and they're 45 years old,
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  and their parent with the mutation got symptoms at 55,
• 10:33
  they would be negative 10 on EYO,
• 10:35
  or essentially 10 years away from their clinical onset.
• 10:39
  - Okay, so it's like a countdown clock.
• 10:41
  - Mm-hmm.
• 10:42
  And yeah, and that differed across
• 10:46
  the different mutation types.
• 10:47
  But here for Trisomy 21,
• 10:50
  we tend to use a single age for symptom onset.
• 10:55
  - And another thing, and I apologise
• 10:57
  'cause you may have already answered this,
• 11:00
  but you do such cool work, I wanna learn more about it.
• 11:03
  One of the things that I do know about folks
• 11:06
  with Down syndrome is that people with Down syndrome
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  are living longer than ever due to a lot of really cool
• 11:11
  medical advances and additional supports
• 11:14
  that people are able to offer.
• 11:17
  Does that mean that Alzheimer's disease
• 11:20
  for these folks is a growing concern?
• 11:23
  - Yeah, absolutely.
• 11:25
  So the life expectancy in the 1960s
• 11:29
  was around 10 years old, and that was limited
• 11:33
  by the high incidence of congenital heart disease
• 11:38
  in this population.
• 11:39
  And it wasn't till the '80s or so where the surgeries
• 11:44
  were developed to fix these congenital defects,
• 11:47
  and even later for being offered
• 11:50
  to the Down syndrome population because they were concerned
• 11:53
  about how they would tolerate surgery.
• 11:56
  And so with that, life expectancy
• 11:59
  is now in the '60s to '70s,
• 12:01
  depending on what country you're looking at.
• 12:04
  And now Alzheimer's disease represents
• 12:08
  sort of the upper limit on people's lifespan.
• 12:12
  The single age of onset
• 12:14
  that I referred to earlier is 54 years old.
• 12:18
  So that's when you can typically expect symptoms.
• 12:23
  - Yeah, that's rough because it's early.
• 12:24
  But I think it's really important
• 12:26
  that you're able to figure out a typical age of onset
• 12:29
  because that probably allows people and their families
• 12:32
  to better plan for what they'll need to support themselves
• 12:36
  and have the best quality of life.
• 12:39
  Thank you for doing that work.
• 12:41
  - Yeah, and something else that we're looking into is,
• 12:44
  I am kind of talking about this
• 12:45
  in terms of like stereotyped process
• 12:47
  or what happens on the overall population level.
• 12:51
  But we do see individuals that might show some resilience,
• 12:55
  and there's actually a range around that 54 years.
• 12:58
  Some people can get it as late as their '60s or '70s.
• 13:03
  And on the flip side of that,
• 13:04
  there might be some individuals showing increased risk
• 13:07
  where they could get it as early as 30.
• 13:10
  And so we're trying to look at those extreme cases
• 13:12
  and see what's different about them
• 13:14
  to see what kind of pathways we can target for therapy.
• 13:19
  And so while there is this population-level progression,
• 13:23
  there is still some inter-individual variability
• 13:26
  that we're hoping to leverage, yeah.
• 13:28
  - Didn't the Down Syndrome and Alzheimer's Disease PIA
• 13:32
  publish something about resilience research?
• 13:36
  I think it was in 2024 or 2023.
• 13:40
  - Yeah, it might've been 2024.
• 13:42
  Yeah, that was a product of one of our working groups.
• 13:45
  And so that working group is still active.
• 13:47
  There's a paper investigating risk and resilience mechanisms
• 13:51
  in Down syndrome-associated Alzheimer's disease,
• 13:55
  because for a lot of our early work,
• 13:57
  we were focused on developing these timelines
• 14:02
  that apply to the population overall
• 14:04
  to sort of inform clinical guidelines and clinical trials.
• 14:08
  But as we're doing more and more work,
• 14:09
  we're realising that not every individual
• 14:12
  falls onto these timelines perfectly.
• 14:15
  And so some people will get it much later,
• 14:17
  and maybe they're doing different things
• 14:20
  like in terms of lifestyle,
• 14:22
  or maybe they have some other protective factors
• 14:24
  in terms of comorbid co-occurring conditions,
• 14:28
  or maybe their overall morbidity rate is lower.
• 14:34
  And so we're trying to figure out what factors,
• 14:36
  even in a genetically determined form
• 14:38
  of Alzheimer's disease,
• 14:39
  might push these timelines apart for individuals.
• 14:45
  - Very cool.
• 14:46
  And are there any other really hot topics
• 14:50
  or exciting things in your field right now
• 14:52
  that you wanna talk about?
• 14:54
  - Yeah, so I've been talking about sort of these timelines
• 14:59
  and all of this data coming out
• 15:00
  to really support clinical trials.
• 15:03
  And so we're really now just at the start of that.
• 15:06
  So there are three in the pipeline
• 15:09
  that are going to be including
• 15:11
  individuals with Down syndrome.
• 15:13
  So even though they're at this ultra-high risk
• 15:15
  for Alzheimer's disease, they've been excluded
• 15:17
  from all of the previous anti-amyloid therapies
• 15:21
  due to safety concerns or protections
• 15:24
  for individuals with intellectual disability.
• 15:26
  But because these people are at such high risk
• 15:29
  and there is no other way to treat it,
• 15:33
  we've been advocating a lot through our work in the PIA
• 15:37
  for individuals to be included in these trials
• 15:39
  so that we can get the safety information
• 15:41
  necessary for them to enrol.
• 15:44
  And so one of these trials, for example, is using lecanemab,
• 15:49
  which is an FDA-approved anti-amyloid
• 15:52
  that was tested in the non-Down syndrome population.
• 15:55
  And so they're doing a phase IV
• 15:58
  sort of safety extension trial in adults with Down syndrome.
• 16:02
  So we already know it works.
• 16:04
  We have a general sense of the safety.
• 16:06
  We have additional safety guards
• 16:09
  for the the participants with Down syndrome,
• 16:10
  like stricter inclusion criteria,
• 16:12
  but we are allowing them to take the drug.
• 16:17
  And so we'll see what other special considerations
• 16:22
  we need to make for people with Down syndrome
• 16:24
  when we're providing these treatments.
• 16:27
  And so I think that's a really critical step forward.
• 16:29
  - That's really cool.
• 16:31
  And another follow-up question.
• 16:33
  I know one of the issues with clinical trials
• 16:35
  is getting enough people of certain populations in it,
• 16:39
  and people with Down syndrome
• 16:41
  are a pretty small portion of the population.
• 16:45
  Were you involved, or do you have any knowledge
• 16:47
  of the recruiting process that was used to get those folks
• 16:51
  into the clinical trial or any of that part?
• 16:55
  - I'm not super familiar with the entirety of it,
• 16:58
  but there are clinical trial-ready cohorts
• 17:01
  that are being established
• 17:03
  to where we do this multimodal characterization over time.
• 17:08
  So we essentially have all their baseline characteristics,
• 17:10
  and we can use themselves at baseline
• 17:13
  compared to them after treatment as the comparison group.
• 17:17
  And so one study that I'm involved in
• 17:19
  called the Alzheimer's Biomarker
• 17:21
  Consortium-Down Syndrome, or the ABC-DS study,
• 17:25
  is one of those clinical trial-ready cohorts.
• 17:28
  And so a lot of our participants co-enroll into this TRC-DS,
• 17:32
  and then they can be recruited through that mechanism
• 17:37
  into these ongoing clinical trials
• 17:39
  based on what they wanna do.
• 17:43
  - That's so exciting,
• 17:44
  and I'm so glad that you're able to use
• 17:47
  that information you're getting all the imaging
• 17:50
  and being able to do the stereotyping,
• 17:52
  to moving it to seeing the specific situations
• 17:57
  and how things can be done to make it better.
• 18:01
  That's gotta be really satisfying.
• 18:04
  - Yeah, it's been a really influential time in the field
• 18:07
  to see how much has changed in the last 10, 15 years,
• 18:12
  especially even with the most recent
• 18:15
  revised criteria for the diagnosis
• 18:18
  and staging of Alzheimer's disease that came out.
• 18:22
  Previously, this was essentially to establish
• 18:25
  a way to diagnose Alzheimer's disease with biomarkers
• 18:29
  and not have to wait the 20 years
• 18:31
  until cognitive symptoms appear.
• 18:34
  And so they established this amyloid-tau
• 18:38
  neurodegeneration framework in order to stage individuals.
• 18:43
  But still, the starting point
• 18:45
  was someone had to be amyloid-positive.
• 18:48
  And if we really wanna know what's driving amyloid
• 18:51
  in the first place, we have to look earlier than that.
• 18:55
  And so in these genetic forms of Alzheimer's disease,
• 18:58
  like autosomal dominant AD or Down syndrome-associated AD,
• 19:03
  they have now been included as stage zero in this framework.
• 19:07
  And so we can study the earliest pathways in the disease
• 19:13
  because we know that they will eventually develop it.
• 19:16
  And so that was a huge change in the field as well.
• 19:21
  So both on the research and clinical trial areas, I think,
• 19:25
  there's been a lot of progress.
• 19:27
  - Very cool.
• 19:28
  (light music)
• 19:33
  That's really helpful to set the scene
• 19:36
  for what I wanna talk about next,
• 19:37
  which is the work of your PIA.
• 19:39
  So how does the work of your PIA
• 19:41
  really support your field of research?
• 19:44
  And I know we talked about you guys had that workgroup
• 19:47
  that had that awesome publication.
• 19:48
  I'm sure you're doing other cool stuff too.
• 19:51
  - Yeah, so in addition to the risk
• 19:53
  and resilience working group, we have another working group
• 19:56
  in development where we're expanding
• 19:59
  to other forms of intellectual disability and autism.
• 20:03
  And so we had a all-members meeting
• 20:07
  about a month ago to engage sort of all the members,
• 20:11
  not just our executive committee, in these regular meetings.
• 20:14
  And we broke out into working groups,
• 20:17
  and this allowed for smaller interactions.
• 20:19
  And each of the breakout rooms was tasked
• 20:23
  with talking about where we wanna go with this PIA,
• 20:27
  what kind of new working groups do we want,
• 20:30
  what would they like to see us do?
• 20:32
  And so one of those was about
• 20:35
  the broader umbrella of intellectual disabilities.
• 20:38
  And someone had been working,
• 20:39
  Eric Rubenstein had been working
• 20:42
  with electronic health record data,
• 20:44
  and they started noticing that a dementia diagnosis,
• 20:48
  dementia, all-cause, as in sort of an umbrella term
• 20:51
  in the health record, was maybe being overused
• 20:57
  in certain cases.
• 20:58
  For example, in individuals that were too young
• 21:01
  for that to be a possibility.
• 21:02
  And now we're developing a survey
• 21:05
  to send out to clinicians to get a sense
• 21:07
  of what their level of experience
• 21:09
  with people with intellectual disabilities is
• 21:12
  and whether any additional clinical training
• 21:15
  or guidelines would be more helpful
• 21:17
  in terms of understanding when to use
• 21:20
  that diagnosis or when to use that code.
• 21:24
  And similarly, for our first working group
• 21:27
  for the Risk and Resilience,
• 21:28
  Dr. Lydia Vasquez and Sigan Hartley,
• 21:31
  they have been developing this survey to send out
• 21:34
  to get a better sense of the risk
• 21:36
  and resilience factors in Down syndrome.
• 21:39
  So following up on that first paper.
• 21:42
  - Very cool.
• 21:45
  Two questions about the new working group.
• 21:46
  So the first one is you're saying that the code
• 21:51
  for dementia is being used potentially
• 21:55
  more liberally than it should by healthcare practitioners
• 21:58
  on folks with autism specifically, is that correct?
• 22:04
  - Yeah, autism spectrum disorder
• 22:06
  or intellectual disabilities, yeah.
• 22:08
  - And I understand that this still needs to be researched,
• 22:12
  but is the hypothesis or the suspicion
• 22:16
  that the healthcare providers are doing this
• 22:19
  because they don't know
• 22:21
  what the appropriate baseline is for these folks?
• 22:24
  - Yeah, I think that would feed into it.
• 22:27
  Or there are things like regression disorder
• 22:29
  in adults with Down syndrome
• 22:30
  where it's kind of like a very sharp decline
• 22:33
  and they might mistake that for dementia.
• 22:36
  And so it's really getting a sense
• 22:37
  of how many patients have they seen
• 22:39
  with these baseline conditions
• 22:41
  and how did they sort of handle it
• 22:43
  when they suspected dementia.
• 22:46
  - Right.
• 22:47
  That's really cool, because then you guys can,
• 22:49
  like you said, we can see, all right,
• 22:52
  do these folks need extra training?
• 22:55
  What else can we do to help these people?
• 22:57
  So who are you looking to join that group?
• 23:00
  'Cause you said it was still being formed.
• 23:01
  Are you looking for members still, or is it closed?
• 23:04
  - Yeah, absolutely.
• 23:05
  Yeah, it's still in its very early stages,
• 23:08
  and we're actually still developing that survey.
• 23:10
  The target audience for that survey would be clinicians only
• 23:13
  since we're interested in sort of getting at that diagnosis.
• 23:16
  - And then the other one you're working on
• 23:18
  is the group that did that great publication on resilience.
• 23:22
  And now you're working on another survey
• 23:25
  where you're looking at the resilience factors.
• 23:28
  Correct?
• 23:30
  - Yeah, I believe so, yeah.
• 23:31
  - Okay, that's so exciting.
• 23:35
  - Yeah, I think it really helped shape the message
• 23:40
  that we can provide back to the participants
• 23:43
  in the community when we can start to focus
• 23:46
  on these resilience factors and what people can do about it.
• 23:50
  Like for example, in relation to enrollment
• 23:52
  in clinical trials rather than just sort of this
• 23:56
  inevitable progression, yeah.
• 23:59
  - What initially brought you to join the PIA?
• 24:02
  - A colleague reached out and asked if I wanted to join.
• 24:05
  And at the time, I wasn't doing any networking at all.
• 24:09
  I was pretty shy, but they just told me about it.
• 24:14
  I figured why not?
• 24:15
  So I joined as a student member.
• 24:16
  And then from there, it just turned into a really great
• 24:19
  opportunity for engaging with more senior scientists
• 24:22
  and really hearing the way people think about certain topics
• 24:26
  or how they sort of plan or organise different events.
• 24:31
  And so after that, I signed up to be programmes chair,
• 24:35
  and then will be the new vice chair.
• 24:38
  So it's been a really helpful, successful collaboration.
• 24:42
  And then I'm in it for the long term.
• 24:45
  - I love that, and I cannot overstate,
• 24:48
  as someone who also joined as a student member,
• 24:51
  the importance of just being in the room
• 24:55
  and listening to the people who have been in it for longer,
• 25:00
  their thought processes and what their thoughts are
• 25:04
  on the trajectory of things.
• 25:08
  I feel like I should say
• 25:09
  that there's something more structured about
• 25:11
  the PIAs that is useful,
• 25:13
  but I think that is one of the most useful experiences,
• 25:17
  'cause, you know, different places do webinars,
• 25:19
  but to get actual time with senior people
• 25:23
  that's unstructured is really valuable.
• 25:27
  - Yeah, absolutely.
• 25:27
  (light music)
• 25:33
  - What does your PIA have planned for the coming year?
• 25:38
  - Yeah, so earlier this year,
• 25:41
  I guess I forgot to mention how this would be another way
• 25:44
  that the PIA contributes to, I guess, the field of research
• 25:49
  is that through our ISTAART, we applied for funding
• 25:52
  from the Alzheimer's Association
• 25:55
  and we got funding for a conference.
• 25:58
  And so this conference is called
• 26:00
  the Down Syndrome Associated
• 26:02
  Alzheimer's Disease/Autosomal Dominant
• 26:05
  Alzheimer's Disease Conference,
• 26:08
  or essentially the DSAD/ADAD Conference.
• 26:13
  And it's essentially to bring together
• 26:15
  researchers from different fields,
• 26:17
  studying these different kinds
• 26:18
  of genetic forms of Alzheimer's disease.
• 26:21
  And we just had our third meeting,
• 26:24
  third annual meeting earlier this year.
• 26:27
  And the fourth one has been announced
• 26:29
  for London in next fall.
• 26:33
  So if anyone's interested in attending that,
• 26:34
  that one's a really great small-format conference
• 26:37
  that engages the audience a lot.
• 26:42
  And so conference planning for that
• 26:45
  will be ongoing this year.
• 26:47
  We're also going to have a PIA Day event
• 26:51
  on July 11th, I believe.
• 26:54
  And there, we're gonna be talking about
• 26:57
  the return of results for observational research studies
• 27:03
  as well as some of these clinical trials.
• 27:05
  And what's the best way of doing it?
• 27:08
  Are the participants able to understand
• 27:11
  this scientific information because it's a risk,
• 27:14
  not really a diagnosis?
• 27:16
  And are there any sort of like psychosocial factors
• 27:24
  that we need to consider in how we relay this information?
• 27:28
  So there'll be pre-disclosure and post-disclosure surveys,
• 27:34
  interviews, and engagement with MDs throughout the process.
• 27:39
  And so that'll be a really interesting topic.
• 27:41
  That's already a big topic
• 27:43
  in the non-Down syndrome field on how to do that best.
• 27:47
  And so it'll be very interesting
• 27:51
  to see that panel discussion.
• 27:54
  And we have two featured research sessions
• 27:57
  for the conference.
• 27:59
  One will be on these general timelines,
• 28:02
  and the other one will be on the risk and resilience factors
• 28:05
  that pull individuals off of those general timelines.
• 28:09
  - Okay, so your PIA Day, you're doing return of results,
• 28:13
  and is that focused just on the Down syndrome community,
• 28:17
  or is that in general?
• 28:20
  - We're gonna be bringing experts in general
• 28:22
  to help inform how we're going to do it
• 28:24
  for Down syndrome specifically.
• 28:27
  - Okay, that's so exciting.
• 28:28
  I know that's a big new thing
• 28:31
  everybody wants to make sure they're doing it correctly.
• 28:34
  So I'm really excited you guys are looking at that.
• 28:37
  And then you also said you guys
• 28:39
  have a featured research session.
• 28:40
  Do you know what day that's going to be?
• 28:43
  - I believe they're both on the first day of the conference.
• 28:47
  First or second day, yeah.
• 28:49
  - Okay.
• 28:50
  You're opening things up, and then you have your whole
• 28:53
  own conference happening separately.
• 28:55
  I don't think you're as excited
• 28:57
  as you really should be about that.
• 28:59
  Like that's a big deal. (laughs)
• 29:02
  - Yeah, it has been super successful.
• 29:04
  That is the brainchild of Dr. Juan Fortea in Barcelona,
• 29:08
  and he's hosted it there the first three years.
• 29:11
  - What a lovely venue.
• 29:14
  And if somebody wants to learn more
• 29:16
  about that conference you guys are planning,
• 29:18
  what should they do or who should they reach out to?
• 29:22
  - Yeah, they can reach out to anyone in the Down Syndrome
• 29:24
  Associated Alzheimer's Disease PIA,
• 29:26
  or they can do a Google search
• 29:29
  with that great acronym, DSAD/ADAD. (laughs)
• 29:35
  And then we have a dedicated conference website
• 29:38
  where they can find more information.
• 29:40
  (light music)
• 29:45
  - Before we go, I have one final question.
• 29:49
  What advice do you have for someone who's just learning
• 29:51
  about ISTAART and how has it helped you with being involved?
• 29:56
  - Yeah, that's a great question.
• 29:58
  I think, because I was so shy at the beginning,
• 30:00
  just getting involved.
• 30:03
  So reaching out to people.
• 30:05
  They are way nicer than I ever expected,
• 30:09
  especially with the sort of professional stage difference.
• 30:14
  But everyone was willing to help answer questions,
• 30:18
  respond to emails and just, like we said earlier,
• 30:21
  just being in the room with them.
• 30:23
  It's just getting involved early,
• 30:26
  and that really accelerated my career path.
• 30:34
  - Thank you so much, Dr. Patrick Lao,
• 30:35
  for taking the time to join us today.
• 30:38
  - Yeah, thank you.
• 30:38
  - Thank you for listening.
• 30:39
  You can find profiles on myself and my wonderful guest
• 30:43
  and information on how to become involved in ISTAART
• 30:46
  on our website at dementiaresearcher.nihr.ac.uk,
• 30:52
  and also at alz.org/istaart.
• 31:00
  There's a link in the show notes.
• 31:02
  I'm Lillian Morgado, and you've been listening
• 31:04
  to the Relay Podcast from Dementia Researcher
• 31:06
  and the Alzheimer's Association.
• 31:09
  Hit subscribe on YouTube or in your favourite podcast app
• 31:12
  to ensure you don't miss an episode.
• 31:14
  Thank you so much.
• 31:15
  Goodbye.
• 31:17
  - Bye.
• 31:18
  (light music)
• 31:20
  - [Moderator] You have been listening to the Relay Podcast,
• 31:22
  delivered as a collaboration
• 31:24
  between Dementia Researcher and ISTAART.
• 31:27
  This podcast is made at University College London
• 31:30
  with generous funding from the NIHR, Race Against Dementia,
• 31:35
  Alzheimer's Association, Alzheimer's Research UK,
• 31:39
  and the Alzheimer's Society.
• 31:42
  Please like and subscribe
• 31:43
  and share your thoughts in the comments.
• 31:45
  (light music)