The Yale LISTEN Study Town Hall: March 2023

February 27, 2024

Information

Drs. Harlan Krumholz and Akiko Iwasaki discuss preliminary findings and answer questions from LISTEN participants.

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00:04So welcome to the third Listen Town Hall.
00:08Super excited about this.
00:09Awesome to see so many people here
00:11already and I know that that number
00:13is going to keep going up as we go on.
00:16So if you are here right now,
00:18it means that you are enrolled in Kindred
00:20and you're a listen member and that's great.
00:22Kindred is building a network of
00:24data enabled people who have been
00:25impacted by COVID and who want to
00:27contribute to research in partnership
00:29with leading scientists.
00:30In that regard, if you haven't yet
00:33already connected your data on Kindred,
00:35I highly recommend that you do so.
00:37Data is pretty much required
00:39for research across the board.
00:40So on Kindred,
00:41what's so cool is that you have
00:43access to it and you can send
00:45that directly to the researchers.
00:46You can have it's not sent or shared with
00:49anyone without your explicit consent.
00:51Normally in research they have to
00:53manually ask from your providers
00:54and then they'll send it over
00:55and it takes a really long time.
00:57So this really speeds up the
00:59research process.
01:00Again, super excited to have you all here.
01:01Your input and perspectives are
01:03imperative for the research that
01:05they're doing in the LISTEN study.
01:07So really without further ado,
01:08I'd like to hand it over to
01:11the study investigators.
01:12We have doctors Harlan Krumholz
01:14and Nikko Abasaki and then study
01:16coordinators Bernali and Cesar.
01:18So
01:20hi, I'll just start and just hello everyone.
01:22Welcome and thank you so much for coming.
01:24This is such a delight to be able to
01:26have a chance to interact with people
01:28who are who've already joined the study.
01:30People are participating with us.
01:32So here's the idea today is what we
01:34wanted to do is actually make this a
01:37highly interactive session just to
01:38talk to you a little bit about what's
01:40going on with the listen study what
01:42we're trying to accomplish and to
01:44listen to you for ideas and thoughts
01:47about what's next and and how we can
01:49get to the place that we want to be.
01:51The intent was to try to create
01:53a learning community,
01:54a bunch of people who are committed
01:57to trying to provide information
01:58about themselves to to also provide
02:01ideas and suggestions.
02:03And to work with the team,
02:04the Yale team and others who
02:06might ultimately work with us,
02:08like David Petrino and others who who
02:10are interested in in this kind of work.
02:13And so that we can make a move forward
02:14that we could actually make some progress.
02:16And I know all of you probably are
02:19as frustrated as we are probably
02:21more frustrated that the progress
02:23has been so slow.
02:24Both we would like this study to go
02:26faster and the research around us.
02:28So let's think together what what
02:29it would take to make that happen.
02:31One of the first things we want to
02:33do is just sort of flash up a slide
02:35about some of the issues that we're
02:37facing because we want to hear what you
02:39think about how we can move forward.
02:40It's going to be about data and
02:43connections and and number of people
02:45and and I said the good news is the
02:47Kindred community is now at almost 3000,
02:50the number of people who've joined from
02:53Kindred into listen about about half or
02:55so maybe a little bit more have joined in.
02:58And again the the way it works
03:02is nothing happens with your
03:03data without your permission.
03:04If you're in Kindred and you've
03:07been answering questions,
03:08the Yale study,
03:09Listen won't have access to that
03:11information unless you provide explicit
03:13consent and actually join officially.
03:15And then and then with that,
03:18our data scientists,
03:19our researchers are able to work
03:21with the data and what we want
03:23to be able to start doing.
03:24We've been sort of waiting to accumulate
03:26enough people to be able to make some
03:28sort of of a descriptive analysis so
03:30that we could share back with you.
03:32We're trying to get adequate numbers so
03:34that it would actually mean something.
03:36Meanwhile,
03:36there is this other part of the
03:38study which we'll talk about also,
03:40which is trying to take select
03:43individuals who particularly,
03:44you know,
03:45Rep are representative of the kind of
03:47health challenges that all of you are facing.
03:50And see whether or not through
03:52the great work that's being done
03:54in Akiko Asaki's lab
03:55begin to develop some immuno
03:58phenotyping profiles of of people.
04:00And to understand whether or not
04:02there's a correlation between the kind
04:05of symptoms people are exhibiting in
04:06the way in which these thousands of
04:08measures of the immune system that we
04:10might be able to make sort of reflect.
04:12And then also how about compared to
04:14people who don't have long COVID or
04:17vaccine injury and and can we begin to
04:20understand how these different groups look?
04:21Can we begin to move towards diagnostic
04:24tests based on the findings and ultimately
04:27targets for for therapeutic interventions
04:29that are strongly evidence based.
04:32So this is kind of the the
04:33way that we've proceeded.
04:35I also want to talk to us for a little
04:36bit as we move on around some of
04:38the thoughts about trying to create
04:40subgroups within the Listen community.
04:43So what if we were to,
04:45for example,
04:46pull together groups of people who
04:48had these sort of internal vibrations
04:50and tremors that have been characters?
04:52We'd written a preprint about a
04:54bunch of people who had had exhibited
04:56this and were contacted quite often
04:58by people who have this symptom.
04:59It's not very well characterized and
05:02we believe that maybe we should,
05:03you know be pulling together a a sort
05:06of smaller group that has all has that
05:09kind of symptom or or POTS for example,
05:12the the postural orthostatic tachycardia
05:15syndrome that many people also exhibit.
05:19Anyway,
05:19the idea is should we be trying to
05:21create these subsets that are a little
05:23more homogeneous with regard to their
05:25experience and then dig deeper into that.
05:26So we want to talk with you about
05:28that idea also and see what you think
05:30vaccine injury is another natural one
05:32to kind of really focus in on and
05:34see whether or not there's evidence
05:36of certain signals that might help
05:37us to to understand this.
05:39By the way for some of you in the long
05:41COVID community and we've heard this.
05:43So I just want just want to mention it.
05:44You know they've they've asked
05:46well why is vaccine injury, why,
05:47why is vaccine injury people here?
05:49Why are they included in the listen study?
05:51And then some people have even
05:53expressed concern in all the vaccine
05:55injured people know this very well
05:57where people are saying like well
05:59are is this a part of anti vaxxer,
06:01what's going on with this?
06:02And I just want to say to people
06:03on COVID side,
06:04because you may not have heard us
06:06talk about this, is that we've,
06:07you know, been in contact with many
06:09people who were vaccinated,
06:10not anti vaxxers.
06:11These are people who got vaccinated
06:13and as soon afterwards began to
06:15report symptoms that in many ways
06:17were very similar to the kind of
06:19symptoms that many people in the long
06:21COVID community were also reporting
06:22But some ways different and but
06:25but devastating to their lives and
06:27were found themselves in a position
06:30where because of the politics or
06:32because of of a whole
06:33range of different issues,
06:35you know, people wouldn't talk
06:36to them or wouldn't help them.
06:38And a lot of scientists want to steer
06:40clear them because people concerned
06:41about what it would mean to, you know,
06:43around the perception and so forth.
06:45And for us. And let me say
06:47Kiko was very clear about this.
06:48I was very clear about
06:49this from the beginning.
06:50You know, we we want to bring good
06:52strong science to this and we saw
06:53people who were suffering and and we,
06:55you know,
06:56we want to avoid politics around this.
06:57We want to try to get to how can we
06:59help people resume their lives and
07:01and how can we address that suffering.
07:03And because there were some
07:05similarity to the symptoms plus we
07:06were set up in the listen study to
07:09be able to characterize a new new
07:10emerging condition and and be try
07:12to figure out what it is they were.
07:14They had the same challenges of people
07:16along COVID which is no diagnostic test.
07:18Many people not believing them,
07:19being put in a position where their
07:21symptoms were being discounted
07:23even though they knew that they
07:24were really that that their their
07:27lives had experienced something
07:28quite dramatic and devastating.
07:30So then that's why we expanded the
07:33study to to be inclusive of them and
07:36believe they deserve the same respect
07:37that everyone that that that people
07:39in the long COVID community do.
07:41And and we need to be able to
07:43work together constructively and
07:44scientifically to to proceed.
07:46So anyway I wanted to say that
07:47because that had been raised to me
07:49and some people on the long COVID
07:51side may have wondered about that.
07:52So I wanted to say why,
07:54why we've been inclusive and
07:56welcoming and why we're working
07:57together to release suffering.
07:59And so that's why that's
08:00why we brought them in.
08:01So let me just go to this issue
08:03about the enrollment side.
08:05Cesar, do you mind putting up?
08:07And
08:11then I'll make a few comments about
08:14overall what we think we've learned and
08:19and then then we'll go to
08:21these various various parts.
08:22And if you've got questions
08:23or thoughts as we go along,
08:24please write them down South.
08:27The the, the status so far is that.
08:30So I said maybe there are
08:323000 people in Kindred.
08:34Among the people in Kindred,
08:37you know you can see here
08:39this is as of February 23rd,
08:411519 and have enrolled in Listen.
08:43So this is a little bit of a
08:45disappointment by the way because
08:47my belief was that most people
08:49join Kindred in in an effort
08:51to join a a research study.
08:53I mean I would I would have thought a
08:55higher percentage of people motivate
08:57on that maybe that's our problem
08:59maybe we need to communicate better
09:01to folks what it is that that we're
09:03doing and what this transition is we
09:05we know and on the Hugo side we know.
09:07Look I I hope you'll be patient with us.
09:09We're iterating trying to improve
09:12trying to to take in comments Leslie
09:15can talk about that at some point or
09:17Talia but it's it's you know we're
09:19trying to get stronger but maybe
09:21the messaging needs to be clear.
09:22But only only about half the people
09:24who joined Kindred moved over and
09:26then you can see there are 500 people
09:28with long who these are all like it.
09:30Remember the initial questionnaire
09:32where it's sort of asking you
09:34know what you have what what what
09:36what you're experiencing and 500
09:38are reporting long COVID only.
09:40Interestingly there are almost 300
09:43people who are reporting a combination
09:46of long COVID and vaccine injury.
09:48There's another reason to be welcoming
09:50into the study to to open it up more
09:53broadly because actually there are
09:54people who believe that they had long
09:57COVID who report having long COVID
09:59and then report also believing and
10:02experiencing after the vaccine that
10:05that there was another thing that
10:06happened to them that that compounded it.
10:09So and in many cases this isn't just
10:12that whether the vaccine exacerbated
10:14the underlying long COVID but they
10:16believe it that they feel it and
10:19experience it as something different.
10:20325 people with vaccine only
10:22we went out for a call.
10:23We really need some controls.
10:26So we have 204 people with controls
10:28and then you may say like well
10:30how do you have unknown,
10:31238 unknown and and this is because
10:33I mean there's people can skip
10:35those questions or they can not
10:37be filling out the questionnaire.
10:39So one of the things I want to
10:41talk and think with you about and
10:44appreciate be your note here about
10:46finding the website confusing.
10:47So let's figure this out like let's
10:49let's work this out together about what
10:52we do to make things less confusing,
10:55in fact not confusing at all and
10:56really much more straightforward,
10:58really committed to that.
11:00But on the survey response rate,
11:02you can see that, you know,
11:04remember that there were a variety
11:06of of questionnaires and we
11:07weren't sure how to do this.
11:08You know it.
11:09It's always this balance because we
11:10want detailed information on everyone.
11:13That's how we characterize people.
11:14And by the way, you know,
11:15for some of these conditions,
11:16that's what I'm saying.
11:17It may make sense to to develop like
11:19subgroups because you want to go really
11:21deeply and understand like what's their,
11:22what's the experience,
11:23what is it that people are
11:25facing every day and and what
11:27are the limitations and so forth.
11:29And you know, even this,
11:30even these questionnaires don't
11:32really get to the level of detail
11:34that you'd like to get to.
11:36But we tried to make this,
11:37these questionnaires by the way
11:39that are up on the Kindred site.
11:41We're done in collaboration with
11:43with some of you and others.
11:45You know that.
11:45In other words,
11:46it wasn't just like researchers just
11:47saying what do we want to ask people?
11:49But we tried to work hard
11:52and many of you know this.
11:53You know,
11:53we went back and forth with with groups.
11:55Denise,
11:55you were wonderful and helped us a lot.
11:57And so did a lot of other
11:59people giving us feedback,
12:00helping us to figure out what
12:01should go into these questions,
12:02recognizing that there are
12:04trade-offs between the volume.
12:05And also many of you have got fatigue.
12:08It's not easy.
12:09You have trouble concentrating.
12:10So like just add that on,
12:13you know, to all of this,
12:14how do we balance this?
12:15And then one of the things we decided
12:16to do basically because we were
12:19told by people who were facing these
12:22conditions that we need to divide this up.
12:24It can't be like one large question.
12:26It's too daunting,
12:28too intimidating,
12:29too, too hard.
12:30And so that's why we tried to divide
12:32it into you know these various ones
12:35that you could March through Plus
12:38on any given one if you stop you
12:40can restart at that point and we
12:42thought maybe that would be better.
12:43But but what's what's happened is
12:46that you know so people join listen
12:49and then not everyone who joined
12:51listen actually even even filled out
12:54all the basic information in the
12:56in the in the first questionnaire
12:58the basic information questionnaire
13:00and then then we had the survey
13:02on survey questions of non medical
13:04factors on conditions and symptoms.
13:06You know I know it's long that
13:07one about symptoms by the way the
13:09vaccine injured people let us know
13:11that we we neglected there was a
13:12longer group of questions for long
13:14COVID than there were vaccine injury.
13:15We've we've tried to remedy
13:18that on the kindred side.
13:19On the Kindred side,
13:20remember these are all questions
13:21they're given on Kindred and then
13:23if you agree to come in to listen,
13:24you're sharing those responses.
13:25And by the way just the Hugo philosophy,
13:28I know Tally said this,
13:29but just to reiterate everything
13:31you fill out goes into your data
13:33assets and nothing gets moved
13:35without your permission.
13:36So it's it's essentially you're
13:39you have
13:40always say agency over your own data and
13:42there's no like other side to this word.
13:44Data gets sold or monetized or anything.
13:47Nothing moves without your permission,
13:49but you know, so you filling
13:50out things on the Kindred side.
13:52And the Kindred team had sort
13:53of put these when I said we,
13:55I guess I should tell you which hat
13:56I'm wearing when I'm wearing that hat.
13:58It was like on the Kindred side,
13:59Hugo hat working with people to
14:00try to figure out what what should
14:02the community's questions be.
14:04And lots of people,
14:06many people on this call perhaps
14:08participated in helping to define that.
14:10But you got 91% filled out the first one.
14:12But then you go to non medical factors
14:14you're only at 2/3 conditions and symptoms.
14:16You're getting close to only only
14:18half therapies about two, two 3/4.
14:20So it makes it difficult in a in a
14:23usual top down highly hierarchical
14:26medical study you know you're getting
14:30pounded from the from people who
14:32are in the study to for you to fill
14:35out questionnaires and and it's
14:36you know very regimented.
14:37This was saying like what about a community.
14:39What if we built the community and
14:40the idea was in good faith people
14:42would fill out these the the service
14:43to characterize themselves and be
14:45willing to share them into the studies.
14:47But this just limits us a lot.
14:49So we,
14:49you know we have 1500 people but when
14:51you start getting down to the number of
14:53people who've actually provided information,
14:56we're we're at a much lower thing.
14:57So one of the questions we wanted to ask
14:58you was what should we be doing about this?
15:00How can we,
15:01how can we help to address this
15:03communicate and and also what
15:05should we be doing on our side.
15:07Maybe we should be doing preliminary
15:09preliminary analysis just to show
15:10good faith on our side of what
15:12it is we're we're trying to do.
15:13And at this point this is just
15:16simple characterization of of the
15:17cohort and it's also helping in
15:19the selection of people that are
15:22being sent to the lab so that that
15:24we can help select people who are
15:26going to get the immunophenotyping.
15:28But but the one of the other big
15:30things that's important is the way
15:32that it was working is we believe that
15:34it was very important to connect to
15:37the digital electronic health record
15:39data because that's also going to
15:41supplement the self reported information.
15:44And many of you have had an
15:46abundance of testing.
15:47Now some of that testing may have
15:49occurred in places that don't have
15:50portals or we can't connect you,
15:52but a lot of it has occurred within
15:55mainstream medical institutions
15:56which we can bring in to.
15:58So that again brings in your data
16:01assets and that you would then
16:03would be in a position to share
16:05into the listen study and and
16:07you know we're we're at a third,
16:09a little less than 1/3
16:11of people have actually made even one
16:14connection and you know many of you have
16:17got connections in multiple places.
16:19So again this is, this is not about
16:22saying you know this isn't a criticism.
16:25This is about I think if anything
16:26we need to be working with Hugo.
16:29We now yell hat working with Hugo team
16:32to figure out like what would we what
16:34would we have to do to get people to you
16:36know get this number up to 80 or 90%.
16:38So that all the people who are in
16:40listen we've got data that's streaming
16:42in that we can again with your
16:44permission and and when you're giving
16:46permission into the study you're
16:47giving it for the singular purpose
16:49that you know we're doing this study.
16:52So again it's not like you know
16:53the data goes into Yale study and
16:55then again no one's monetizing
16:57no one's trading on your stuff.
16:59It's about trying to just move as
17:02rapidly as possible to to try to get
17:04some answers and to to there's another
17:06agenda I have by the way which is
17:09raising awareness with real data about
17:11the real life experience of people.
17:13I mean not saying if we want to
17:15position ourselves to really be able
17:17to make these insights and then we
17:19need to be getting all this stuff lined
17:22up and and and getting it to work.
17:24There's also,
17:25I'll just signal that at least
17:27on the long COVID side,
17:29we hope that we you know are going
17:31to be able to launch but still
17:34relatively small trial Paxlovid for
17:37long COVID extended dose 15 days.
17:39I'm just saying that because
17:41it's in the public record,
17:42it's on clinicaltrials.gov
17:43I'm restricted by the RB,
17:45They're just approving now like
17:46what we can go public with.
17:47So saying this will also be important
17:50because people coming in the trial will
17:53need to be connected to the records and
17:55and also filling out surveys and so forth.
17:57And so we need to get
17:58smart about how to do this.
17:59Otherwise the research won't be,
18:01won't be respected,
18:02won't we will have trouble
18:03getting attention to IT.
18:04People will think this method
18:06doesn't work as well as it should.
18:08They and we should be defaulting back
18:10to the old days of very hierarchical
18:12approaches and not one where we're
18:14really working with the community.
18:16So they will go around and burn alley.
18:18Also maybe you can say a word or two
18:20about just to to people can know that
18:23we're inviting people to for the Bloods.
18:26But the, you know,
18:28one of the things that I'll
18:29say a couple quick things,
18:30One of the things that's true,
18:31by the way,
18:32is that we have a really interesting
18:34community that's assembled
18:35both in Kindred and in Listen.
18:37And I I'd say that because generally
18:39very activated even though I'm bringing
18:42up this issue about completion,
18:44we have heard from a lot of people
18:46there's a lot of engagement.
18:47And by the way,
18:48this is a group that is suffering.
18:50I mean when we look at their overall
18:53health scores that you know it's
18:54reflective of what you guys have in
18:56your lived experience if the nation
18:58if you ask people remember the one
19:00that was like say what your health
19:02is from zero to 100 and if you did
19:05that in the nation at large we would
19:07some people have chronic conditions
19:08over the unit you end up in the 80s
19:11on average just as representative
19:12sample people in the United States.
19:14But if you but in our group we were
19:18around 50 around 50 it's it's profoundly
19:20depressed no surprise to anyone here.
19:22I mean I'm not telling anything
19:24you don't know but it's it is of
19:26note that that we've we've brought
19:28together a lot of people who are
19:30suffering and that's why I think
19:31when we hear the stories we interact
19:33with people who are in this position.
19:34We really want to to make a difference.
19:36So that that we should be asking.
19:38I one of the intents in the beginning
19:40on the Kindred side was to hear like
19:43here's some really important things
19:44that we should be learning and seeing
19:46if we can put out new questions.
19:47But we're worried about doing that
19:49given that we're having trouble getting
19:50people fill out the one basic ones.
19:52This idea about the smaller subgroups
19:54of people who've got you know a
19:57whole group of people having a town
19:58hall for example for people with
20:00with internal tremors and vibrations
20:02and talking about like what can we
20:04do to move this group forward even
20:06though it'll be smaller and and then
20:09also just alerting you like that.
20:11We are beginning this issue with
20:13the labs and and reaching out to
20:15some people and and I I know some
20:17people expressed interest in this.
20:19I think that's great.
20:19We love hearing from you.
20:21We're also just in the beginning
20:23trying to identify some.
20:25You you were trying to get good at
20:26this and mostly the workflow not the
20:28lab is good at this but I mean the
20:30the challenge is the workflow how
20:32do we identify people and to bring
20:34them across and the many of you ask
20:35can I get all of that information
20:37back and I I should make a comment
20:39about that which is we want to share
20:41as much as possible with everyone.
20:43But we again the regulatory environment
20:46prohibits us from sharing some things back.
20:48So when they are lab test experimental
20:51the the regulatory authorities
20:52and the IRB is an example of this.
20:55But you know it has said they're
20:58worried that because we we're not at
21:00the same standards of a clinical test,
21:02right they're laboratory time we're
21:03doing thousands of them and they're
21:05worried people may make decisions
21:07based on lab tests that they that
21:08that really aren't ready for prime
21:10time yet with regard to clinical use.
21:13And so we our hands are tied for
21:15some things
21:15don't think it's for lack of interest in
21:17being able to return as much as we can,
21:19but we can return some things and and we we
21:22are we're going to return everything we can.
21:24But but just know that that the
21:27constraints are not our our wish to do it.
21:30The constraints are our mandate
21:32to be regulatorily compliant.
21:34So that that's where we have to do
21:37that we can be what we can try to
21:38be clear about this and show you
21:40what can be returned and so forth.
21:41I mean those are all things.
21:43I don't know.
21:43I didn't mean to pick on you Bernali.
21:45I mean if you want to say anything
21:46about what we're doing or and I want
21:48to then hand over to Kiko to make
21:50any comments that that she wants to
21:51make or say saw her and so forth.
21:53But anyway,
21:54again I get one to express deep gratitude.
21:57Let some others just say a few words
21:59and then maybe we can just pick out some
22:01things that may be coming across on
22:03the chat that that that we can talk about.
22:06But thank you so much.
22:08And and there's one more thing
22:09which is there is a web.
22:10There's a e-mail.
22:11Many of you know it already but but I know
22:14say sorry, the e-mail is listenstudy@el.edu,
22:17isn't that it?
22:18That's correct.
22:18I'll put it in the chat.
22:20You'll put it in the chat.
22:21So you know we're we're not afraid
22:23to have a lot of people e-mail.
22:25So it's and we do our best you
22:27know that it's hard sometimes to
22:28keep up with with everything but
22:30we do our best to try to do that.
22:32I know maybe I should go to you, Kiko, next.
22:33Do you want to and go ahead.
22:35You're the really most people
22:37joined to hear you, not me.
22:39Well, thank you. Thank
22:40you so much, Harlan, for the great
22:44description of what's happening.
22:46And I also enrolled in Listen.
22:48And I've also, you know,
22:51struggled to kind of fill out the
22:53forms in a timely manner because I
22:55wasn't checking the e-mail or I wasn't
22:57checking the right websites and so on.
22:59But eventually I was able
23:01to fill all the surveys.
23:02So it is it may not be very intuitive
23:05because when you first log in you
23:07may not see all the surveys at once.
23:10It's like giving sequentially and
23:12so you would have to kind of follow
23:14you know fill out one survey and
23:16then to the next and and so on.
23:18So I I sort of I'm also experiencing
23:21what you've gone through together
23:24and I'm also going to be you know
23:28providing my biospecimen next week.
23:30So I'm very excited about that.
23:32So I'll be
23:32able to, I just want to interrupt
23:34one second because we did change
23:35the survey thing just so people
23:37know it's been updated just
23:38because of everyone's experience.
23:40So now when people enroll and listen,
23:42they'll get or when they enroll in Kindred,
23:44they get the baseline survey.
23:46And once they've completed the
23:47baseline survey within 24 hours,
23:49all the other surveys will come in
23:50and they can answer them at any time.
23:52And the story survey is now a diary.
23:55It stays in their task list at all time,
23:57you know forever.
23:58So people can continually update that.
24:00So just to clarify,
24:01we actually heard everybody's issues and
24:03we've we hopefully have fixed that problem.
24:05So thank you for feedback from everyone
24:08on that. Yeah.
24:09Thank you, Leslie. That's great.
24:12So it's already been updated
24:13and improved. Wonderful. Yeah.
24:16And so with respect to what
24:19the data that we already
24:20have from you, thank you.
24:22We are starting to sample and recruit
24:26some of you to look at vaccine injury.
24:30We you know we're also needing
24:33more controls that's sort of where
24:36the kind of hurdle is right now.
24:38We, we have a lot of great people who've
24:41contributed to the vaccine injury group.
24:43There's over 300 people who
24:44are already enrolled in.
24:46Listen, the controls are increasing.
24:49Thank you to all the people who
24:51are enrolling as a control group,
24:53but we need more.
24:55So if you could, you know,
24:58ask your friends or family or whoever
25:01to consider enrolling in this study,
25:03that would be great.
25:05And then there are some,
25:06you know,
25:07so we are working
25:09around the clock as much as we can.
25:12But there are some things that take time.
25:13For example, we have to collect
25:16enough samples to do certain assays.
25:18So we can some of the assays we do real time.
25:21As soon as we get the samples,
25:23we can measure them.
25:24But others we would need to do it in batches,
25:28hopefully one batch to be able to
25:31compare one value versus another.
25:34And those things work accumulating
25:36until we have enough samples so we
25:39can do those types of analysis.
25:41So for everything to come together to
25:44inform us and to be able to analyze
25:47that group vaccine injury versus
25:49long COVID versus healthy control,
25:51these are going to take a little while.
25:55So please bear with us.
25:57You know it it research is unfortunately
26:00cannot be done instantaneously,
26:02but we're doing it very,
26:03very carefully and collecting
26:05enough matched controls.
26:07And Bornale
26:08is the hero in that
26:10he's really amazing.
26:12She's looking through the data
26:14to find people who are suitable
26:17matches for the vaccine injury group
26:19as well as the long COVID group.
26:21So yeah, we're very excited.
26:24We've also, I know that some of you
26:26asked about the micro clot analysis.
26:28We have began to do that for the cohort.
26:31So now we are doing things that are
26:34already in the preprint as well as
26:36micro clots and platelet activation
26:38analysis that's done in real time.
26:41So we are also looking at some of
26:44those things and you know we'll be
26:46accumulating of course more number in
26:48order to be able to share anything with you.
26:50But just know that we are incorporating
26:54newer things like that as well
26:57as looking at circulating spike
26:59protein and other aspects.
27:01So we are adapting and we
27:04are incorporating new,
27:05new ideas and new things that
27:07are suggested by you as well
27:09as others in the field.
27:10You
27:13want to comment,
27:15yeah, just the only thing.
27:16So for the subset that we are
27:19selecting for sample collection,
27:21so after the biospecimen collection,
27:23on the same day,
27:24we actually send you 2 surveys
27:26which we request you to fill in.
27:28It's very helpful because we get
27:30to know your present status.
27:32So it would be very nice if you
27:34comply with the study design
27:36and also fill up those surveys.
27:38And as Akiko has mentioned,
27:40we are selecting A subset right now
27:42in order to do the collection and
27:44we definitely need more controls
27:46to do proper statistical analysis
27:48before we tell you anything.
27:51So that's the basic idea.
27:53So there were a few questions
27:55Akiko and Harlan to the study
27:57e-mail and I promised them that
27:59we'll find some answers to you.
28:01So I could start with three
28:03questions and Talia also had a few
28:05questions that she has mentioned.
28:07So I I could start with the first
28:08one Talia and then we'll go back to
28:10the questions that you have as well.
28:12And and one thing Bernal,
28:14I just wanted to also say I noticed
28:16some people also offered to their help
28:18and and you know interest And so I
28:20just want to say thank you for that.
28:22And if people put their that in there
28:24and we'll we'll route it to the proper
28:26place whether it's Hugo or us or
28:28listen everything and we'll try to
28:29get back to people who express that.
28:31So thank you. Sorry, go ahead Cornell.
28:33Yeah. So the first question
28:36is for both of you actually.
28:37So here is a participant who says that
28:40I would like to make a suggestion.
28:42I believe there are likely quite
28:44a few people like me who are not
28:46sure definitively how they ended
28:48up with long COVID like symptoms.
28:50We have never had a positive test result
28:53for COVID and it's quite possible we have.
28:55We had only minor short lived
28:59symptoms or were asymptomatic.
29:01We are vaccinated,
29:02but our symptoms did not immediately appear
29:05in response to the vaccination either.
29:07So we are left to select vaccine
29:10injury as our likely 'cause,
29:12even though we do not know for sure
29:14that's what triggered our issues.
29:16I just hate to over count vax injuries,
29:19especially given the current current
29:21politics and disinformation war around
29:24vaccines or under count long COVID cases.
29:27Unless and until we know for sure what
29:30triggered the symptoms in people like me.
29:32Not sure if it changes the questions
29:35asked of us as a part of the study.
29:39Yeah, that's an excellent question.
29:41We struggle with that as well because in
29:45especially during the early phase of COVID,
29:48there wasn't enough testing available for
29:51people to know if they had COVID or not.
29:54And also even later on as the questioner says
29:57the the mild or asymptomatic infections,
30:00one may not be going to the
30:02doctors to get tested or getting
30:04an antigen test to do themselves.
30:06So it it is a little ambiguous.
30:08There isn't a clear cut way of
30:11distinguishing what may have led to
30:14the long COVID like symptoms either
30:17the anti nuclear capsid antibody which
30:20is only generated after infection
30:23then to wane quickly.
30:25So if we capture that that's great.
30:27We're doing all of these assays by the way.
30:29If we capture the anti nuclear
30:32capsid antibody in somebody who
30:34claims to have had vaccine injury,
30:36we should be able to distinguish that.
30:38That may that may not be just vaccine
30:42injury but that may be long COVID and
30:44or vaccine and vaccine or or not.
30:47But those are not perfect.
30:49Like I said those anti nuclear capsid
30:51antibodies don't last very long.
30:52So if we don't capture that blood samples
30:55during the time of duration of that antibody,
30:59we still wouldn't know.
31:01But we are going to be looking at this
31:04as a group to see what we are finding.
31:07There are clearly some people with
31:10only vaccine injury and clearly
31:12some people who have only long COVID
31:14and there are people with both.
31:16So we're going to be comparing immune
31:19phenotype and in those three versus
31:21the the control to see if there's any
31:24unique features and maybe in the future
31:26we can tell tell you what you may have had.
31:29If we find a a clear signature,
31:32we may not find it,
31:33but it's very important for us
31:35to kind of be able to study this.
31:37So the labeling is tricky because
31:39none of us for sure know we're
31:42never exposed to COVID or not.
31:44We know that we've gotten the
31:46vaccines or not, that's easier.
31:47But the COVID part is a little tricky.
31:50But nevertheless,
31:51we will be looking at everything
31:53we have in a hand to be able to
31:56distinguish whether someone has
31:58had COVID and or vaccines.
32:01And I'll just add one quick thing,
32:03which is that you're raising an
32:05important issue, which is we we shouldn't
32:08be forcing people into a response.
32:10And if people say, I think I've got something
32:13but I'm not sure exactly what it is we,
32:15I have to go back to the survey,
32:17but we it it and remember
32:19I was saying the unknown.
32:20Well, I there's some people who
32:21haven't filled it out.
32:22Those are unknown.
32:23But there we should allow people to
32:25say like I I don't know what I've got,
32:27like I might have one or the
32:29other and it's uncertain.
32:30So we can go back and look
32:31and see if we can improve.
32:32The surveys obviously with La
32:34Pizza have already filled out
32:36things but but you you are raising
32:38an important point that you know
32:41sometimes surveys can force you to
32:44answer something which it doesn't
32:45really capture the reality for you.
32:46So we have to be thoughtful about that.
32:50So here is another question.
32:52It is regarding COVID in Little
32:55Children and one of the participants
32:57has asked this question.
32:59I have read papers explaining why
33:02COVID is usually mild in kids under 5,
33:05but I cannot find any follow up studies
33:08about possible sequels after six,
33:101218 months after mild infection in kids.
33:13Do you have any information or references
33:16about sequels in the medium term in
33:20little kids after mild infections?
33:23Yeah. So the the studies
33:26on late time points that the questioner
33:29is asking is not not yet available,
33:32but there are studies that have
33:35looked at four weeks time point and
33:37and and a little bit further beyond.
33:40There's a a paper in Lancet
33:44Children's Health.
33:45Yeah, that that looked at like 44,000
33:48children who had COVID or not and they
33:52followed their symptoms over time.
33:54And there were in the group
33:57of zero to three years old,
33:59there was a increased incidence of
34:01symptoms in people who children who
34:04had COVID versus those who didn't.
34:07The match controls.
34:08So there is some evidence that at
34:10least for the short term there,
34:12there seems to be an increased
34:15incidence of these symptoms.
34:17And the the types of symptoms actually
34:19also differed between different age groups.
34:22But that's just one of the studies.
34:24There are other studies with smaller
34:26numbers that are also looking
34:28at those sequela in children.
34:30But I would have to say it's a lot
34:33less study than adult population.
34:36And so, yeah, we,
34:37we would really need more studies on
34:39that in the future to figure out what
34:41percentage of the children are having
34:43these kinds of symptoms later on.
34:47Yeah. Thank you. I don't have
34:48anything to add to that. That's great.
34:51Harland. One question I think I
34:54read here was in the text here.
34:57So the question is,
34:58are you going to classify long
35:01COVID into cardiovascular
35:02pulmonary neurologic per SE or
35:04are you going to look at symptoms
35:07and look at symptom clusters? I
35:09think it's a really good question.
35:11And what's the best?
35:12We've been discussing this at length.
35:13You know, what is the best method of
35:16organizing people who just say long,
35:18Let's just take long COVID,
35:19you could say the whole group.
35:21You know, so what's the
35:22best way to classify people?
35:24Because and one of the ways we
35:26thought about it is sort of the
35:27cluster of symptoms that people are,
35:29are experiencing.
35:30You know, there's some people who
35:31have a solitary symptom and there's
35:33some people that have a wide range
35:35of symptoms and and for some
35:36people there are patterns in which
35:38these range of symptoms appear.
35:40So it's not, you know, just one or the other.
35:43I think one of the problems in medicine
35:45in general is that we've siloed it too much.
35:47You know, it's,
35:48is it cardiovascular,
35:49is it pulmonary,
35:50is it neurologic when there's tons
35:52of overlap around some of these
35:54conditions and and there's interactions,
35:56I mean you've got the,
35:58you know there there's mind
35:59body interactions,
36:00there's things that are going
36:01on neurologically that can what
36:03what is POTS by the way?
36:04I mean is it a neurologic disease
36:05or is it a cardiovascular disease.
36:07And you know the truth is it's
36:09a combination of the diseases.
36:11So, you know,
36:12I think what we need to do is to to to do it.
36:17We're going to end up doing it a
36:18bunch of different ways, right?
36:19Like, what if we just look at this?
36:20But like, for example,
36:21it just seemed to us, it,
36:22it's jumping out at us that like,
36:24yeah,
36:25we probably should get a bunch
36:26of people together and have this
36:27internal vibration.
36:27Some of them have a lot of other symptoms,
36:29some of them don't.
36:30But this is a distinctive symptom.
36:31And, you know,
36:32let's see if we can try to understand that.
36:35Same with POTS.
36:35But I mean, we're open to your,
36:38your thoughts too about what
36:39seemed like natural clusters
36:41and an organization of this.
36:43So anyway, open to your thoughts.
36:47Thank
36:47you Harlan. Talia, I will hand it
36:49over to you so that you can ask
36:51the questions you had listed. Sure.
36:53So some of you sent some
36:55questions to me beforehand.
36:56Thank you so much for doing that.
36:58And we have time now to read a few of them.
37:00So first I have one How much
37:03of a problem are errors in my
37:05medical records going to pose?
37:06I've been aware of errors in my medical
37:08records going back to the first
37:10appointment I saw after my vaccine injury.
37:12Some doctors have recorded incorrect
37:13information in their clinic notes,
37:15including symptoms and even diagnosis.
37:19It continues,
37:19but that's pretty much the basis of it.
37:22And I mean this is a really good question.
37:25All of you know that especially
37:26for people who are in this group,
37:29you know that that first of all,
37:30careful documentation about symptoms
37:33and information is critical and it's
37:36not always accurately documented.
37:39So the the thought is that there's a
37:43hierarchy with regard to the quality of the
37:45information that's in the medical record.
37:46And so for example, testing,
37:49laboratory testing especially
37:50that which has to undergo CLIA,
37:52you know sort of under CLIA,
37:53which is this federal standardization of of
37:57of laboratory testing across institutions.
38:00I mean that's that's pretty good to be
38:04able to look across And then you know,
38:06even when you're getting imaging tests,
38:08I mean there's some,
38:09often some variation even among
38:10radiologists and so forth.
38:11So you have,
38:12you have to be able to take it
38:14a bit with a grain of salt,
38:15but but yeah,
38:16I mean I think we we have to be
38:18open minded about how accurate
38:20some of these representations are.
38:22But we're we're going to start with
38:23what they call structured data.
38:24So structured data in the medical
38:27record is going to more be information
38:30that is coming up, you know,
38:33out of lab tests or and we also
38:35can look at medications even there
38:36can be mistakes in medication.
38:38I mean,
38:39we know this.
38:40So that's why I often say the gold
38:41standard is the patient report
38:43because that's what you feel.
38:44And we ask you how do you feel There's no
38:46other gold standard beyond how you feel.
38:48But but yeah,
38:49we have to be thoughtful about the
38:51quality of the data that's in the
38:53medical record and and act accordingly.
38:55So I mean all I can do is
38:57acknowledge you that we know this,
38:59we know this both from our
39:01experiences clinicians,
39:02we know this from our
39:03experiences researchers.
39:03So we we recognize that there
39:06can be noise introduced into this
39:08as a result of of errors.
39:09So,
39:10so you know we just have to
39:11take that into account.
39:14There's a question in the chat actually
39:17that they think is super interesting,
39:19Can we enroll our kids in the study.
39:25So I I think we have,
39:27I'm great interested in looking across
39:29the entire spectrum including kids.
39:30But the study becomes a lot
39:32more complicated especially the
39:34way this study is structured
39:35in terms of the permissionings.
39:37So you know this is built on,
39:39this listen study is built on an E
39:41consent system and we couldn't really
39:43do any consent for for children.
39:46And and then the question is
39:48how would it be administered?
39:49Because depending on the age of the charm,
39:51an adolescent certainly could
39:52interact with questionnaires.
39:53But as you start getting younger it,
39:54you can't really do that.
39:56So I think at at this point,
39:58we felt like it's a big enough hill to
40:00climb to see if we can like work this
40:02out to be able to produce some knowledge.
40:04But I think we hope at some
40:06point that we can do that,
40:07but we're not doing it at at this stage.
40:09So it's 18 and older for the
40:12listen study at this point.
40:13And and again,
40:14in part,
40:15we're trying to minimize some
40:17of the complexities,
40:18but recognize that there's great need to
40:19study and understand what's going on kids,
40:21as Akiko said before.
40:26We have another one.
40:27What specific elevated
40:28cytokines are you seeing?
40:29Have you noticed a difference between
40:31Long Haul COVID and vaccine injured?
40:33I had my cytokines tested
40:35several times and new ones,
40:36IL 13 showed up for the first time.
40:39Why would this happen?
40:41So obviously Kiko's going to answer this,
40:43but just to make sure, Kiko,
40:45we know that we have to be
40:46careful about sharing actual
40:48results from the study yet.
40:49But I know you've got a
40:50lot of thoughts about this.
40:53Yeah. So unfortunately we don't have
40:55anything to share yet because as I said,
40:58there are some factors like
41:00cytokines that need to be analyzed
41:03once together, all together.
41:05So the samples have to be collected enough
41:08number of the samples in control groups
41:10as well as different long COVID groups.
41:13So we haven't done the cytokines yet,
41:15but we have done cytokine studies in
41:18our previous work with David Petrino
41:20where we do see some elevation of
41:23certain cytokines and activated T cell
41:26phenotypes and so on which I have shared
41:28with you in the previous town hall.
41:31But Aisle 13,
41:32it's interesting because it's a type
41:352 cytokine and that we associate
41:38with allergy and Homan's infection.
41:41So that's the kind of cytokines that we
41:43are also seeing in the Petrino study.
41:46That myelon COVID study with type 2
41:49immune cells which are not typically
41:52or it's not not useful for antiviral
41:54defense are being elevated in
41:56many of the long COVID patients.
41:59And that that may be reflecting
42:01in in what the, the,
42:02the questionnaires cytokine panel is showing.
42:06But the other thing to keep
42:07in mind is that cytokines,
42:08so the type of cytokines that
42:10come up and down in long COVID at
42:14least are different depending on
42:16the time from the infection.
42:18So earlier studies that
42:20have looked at cytokines at,
42:22let's say,
42:23you know weeks from infection
42:25versus 6-6 months to 8 months,
42:28the kinds of cytokines that are
42:30elevated in a maintained height
42:32in the clone COVID differ.
42:34So again,
42:36that also speaks to the importance
42:39of looking at post COVID issues at
42:42different time points to see what
42:45we're capturing because I think the
42:47disease is evolving and in some
42:49cases the disease gets much improved
42:51and people recover and in other
42:53cases they're not recovering and
42:55the type of cytokines that we're
42:57seeing also changes over time.
42:59Thank
43:02you bringing it back to the chat.
43:05A lot of people are asking
43:06about sending in samples.
43:07They want to know if they can just
43:09voluntarily send them in or how they'll
43:11know if they're going to be you know
43:13reached out to to send in samples.
43:15A lot of people want to send samples.
43:20I'll just say it's great.
43:21So we're like I said working
43:23out how best to do this.
43:26The it's doing this is is you know
43:31incur some costs cause the way
43:32that we're doing this is people
43:33give consent and then we're sending
43:35someone out to people's homes or
43:36meeting them at a quest for example,
43:38this entire study's decentralized.
43:40I mean there's several
43:41innovative features about this.
43:42We're recruiting from a community.
43:44We're trying to make it so it's all
43:46digital easy for inconvenient for people.
43:48When we're doing the Bloods,
43:49we're working.
43:50So we've got to you know pay for service
43:52to come out like you know to to do this.
43:55So we're trying to be thoughtful about
43:56how do we strategically identify you
43:59know groups that would help give us
44:01the best chance of being able to to
44:03to see signals and learn something
44:05about potential targets and diagnostics.
44:07And meanwhile we're continuing to
44:08try to raise funds so that we can
44:11do larger numbers of individuals.
44:13We're at this point have have reached
44:15out to folks, if you're interested,
44:16I mean signal to us because that
44:18makes it easier.
44:19Then we know like, OK,
44:20you know, if you've meet some.
44:22In every case,
44:23we're trying to build some
44:24criteria and identify people And if
44:26they're people who are interested,
44:27that makes it easier because it is.
44:29I don't know how much is it, Bernal,
44:31it's like 5 vials of of blood.
44:33It's, you know,
44:34people have to be willing to
44:36to participate and, you know,
44:38to have that that kind of blood draw.
44:40I know most of you've had lots
44:41of blood drawn already.
44:42By the way,
44:43when I'm hearing about people with cytokines,
44:45again another reason why we're
44:46trying to get people to connect
44:48the records because it is good
44:49for us to take advantage of of
44:51testing that's occurred elsewhere.
44:52Just even as if we're looking into folks
44:54and trying to understand what's going on.
44:57But you know,
44:58I don't,
44:58I don't know if Akiko or you or
45:00Banali has any other comment about it
45:02but if you are interested we can we
45:04can then keep a note that like you
45:05know this is someone who you know
45:07if there's an opportunity wants to
45:09lean in and and have be part of that.
45:11So we would love that.
45:12So feel free to to let us know
45:14if you're in that that you know
45:15if you feel that way.
45:17But Harlan, why don't you tell
45:18them where they should e-mail
45:19because it's again I see this
45:21confusion between Kindred and yeah
45:24yeah so for for this thing for the for
45:26bloods or anything regarding listen study.
45:28And this is a listen group by the way.
45:30We didn't open it up to all Kindred.
45:32So only people.
45:32This is a this is an internal
45:34research meeting you know that we're
45:36having and we consider each of you.
45:38I mean and and I saw some of you
45:40made some you know or make some
45:42makes even tough comments about you
45:44know criticisms or or suggestions.
45:46We welcome it.
45:46You guys are part of the team that's
45:48what we're trying to figure out
45:49how do we conduct a stay like this
45:51where each of you feels that you're
45:53part of the team and and so you we
45:56hope you feel the opportunity to
45:58to contribute ideas and and again
46:00we're trying to manage that we can't
46:03do everything but we're open to it
46:05to but this is the listen study
46:07and and and any suggestions that
46:10you give us that are about Kindred.
46:12We can pass to kindred or you can tell
46:14kindred that has to do with like the
46:16like some of the comments that were
46:18made about you the UX and so forth.
46:20But but for this and especially about
46:22the Bloods listen study at yale.edu.
46:24Listen study at yale.edu is the best
46:28way to funnel all of these questions
46:30you know say so maybe we can just
46:31put it again in the chat or or Mr.
46:33Someone.
46:34Just I know you put it in before
46:36but just we can put it again.
46:37I'm just so happy to see so
46:39many comments today.
46:40It it just like I can't believe we
46:42ever did research differently where we
46:43didn't have this opportunity to interact.
46:45I wish we could put everyone on the screen.
46:47It just sort of actually became a
46:49technical issue around how can we
46:51do that and also make sure that you
46:53know it's lots of people didn't want
46:54to come on the screen by the way.
46:55So it's sort of like what what's
46:57the best way to balance it.
46:58I don't want you to think like
47:00it's all about us.
47:01It's really,
47:01I would prefer to see everyone
47:03that would be so much fun,
47:05but that's for now,
47:06This is, you know,
47:07the sort of technology that we're dealing
47:10with and why we're trying to to do that.
47:13And and I I know that you know many,
47:17like I said,
47:17I saw the, you know,
47:18last comment about you know
47:20impatience and so forth.
47:21Yeah, that that we should all be impatient,
47:23continue to be impatient and
47:25unhappy with the progress.
47:26I mean I don't think any of us
47:27are happy with the progress.
47:28So.
47:29So we're trying to figure out how
47:30to do this faster and better and and
47:33we're going to be looking for some,
47:34you know,
47:35resources to continue to expand
47:37what we can do.
47:40Yeah. I'm just so grateful that you
47:43are willing to participate in the,
47:45the biospecimen donation that that
47:48means a lot to us because that's
47:51how we are going to understand the
47:54underlying biology behind these diseases.
47:57So thank you so much.
47:59We really look forward to you.
48:01You know, if there's a button to click,
48:03it's easier but if you could just
48:05e-mail us who's interested And
48:07that way Bornali can also put
48:09that in the consideration for
48:11future recruitment purposes.
48:12So thank, thank you,
48:14very grateful. Thank
48:18you. How many other things?
48:19Anyone else anything else you want
48:20to try to we have like another
48:21maybe time for one more thing.
48:26Yes, we have another question.
48:29Have you seen elevated VEGF?
48:31What is your understanding about why
48:32that happens and what do you suggest?
48:36Yeah, again, we haven't measured the
48:38cytokines yet from the lesson cohort,
48:41but there are other studies that are
48:43looking at those issues and and it
48:45does depend on the time of collection.
48:48In our Mylan COVID study we're,
48:50we're not seeing a huge signal for VEGF,
48:53but others have reported some.
48:55So I think again it's too
48:57early to say what that means,
48:58but I'm very interested there's a lot
49:01of vascular involvement obviously for
49:03long COVID and post vaccine issues and
49:05that's why we are including the the
49:08micro clot and platelet activation
49:09analysis in addition to cytokines.
49:14I'll just say some real quick.
49:15I just saw a comment about the Nature
49:18Medicine article that came that did try
49:19to create this sort of classification
49:21system and they were depending on codes,
49:23you know, that was done out of out of
49:27out of a consortium of institutions.
49:29I I think I I applaud anybody who's
49:31trying to add additional information.
49:33One of the things we're hoping to be able
49:35to do is not just take codes because if
49:37you think the medical records got issues
49:40when people are actually coding and
49:42labeling with these are billing codes,
49:44you know what people are putting
49:45up for billing codes can often
49:47be also even more inaccurate.
49:50Yeah, claims studies.
49:52And so we again,
49:55I'm glad they did it well.
49:57We do think that getting the
49:59patient reported information and
50:00then triangulating that with a
50:02some of this other stuff from the
50:04electronic record will give us
50:05more precise understanding of what
50:08people are experiencing and and I
50:10think it'll complement what that is.
50:11And then ultimately as Akiko said,
50:13I mean gosh one of the great privileges
50:14for me is to work with her in her lab.
50:16And I think you know if we we it's
50:19what's desperately needed to understand
50:21underlying mechanisms in the biology.
50:23So we can work hard to try to
50:25characterize people's experience,
50:27understand their outcomes,
50:28but then you know ultimately it what
50:31we really need to understand is the
50:33biology behind this so that we can
50:35be able to create testing and and
50:37treatments that that can make a difference.
50:42Do we have time for another question?
50:45Yeah, maybe one last I guess we
50:46last question, how about that?
50:49OK and and by the way people can,
50:51I mean I hope Talia,
50:52like all of these comments, those of us
50:54who are doing this haven't been able to.
50:56There's lots of content that's been created.
50:58So we can also try to answer
51:00questions after this to try to impost
51:02somewhere so people can see answers.
51:04So it's not just like who got their
51:05questions is we can look it's right.
51:07We get to keep, we can keep,
51:08we can look over this list afterwards.
51:10Right. Talia is that, yeah
51:12the the pre submitted questions
51:13for sure and I think we can we
51:15can send these questions as well.
51:17We can save the questions from the chat
51:19in the comments so that we can we can
51:20make sure we keep that as an archive.
51:22So we can address some of that.
51:25Yeah, go ahead, go ahead.
51:27Last one we have one
51:37has there been communication or
51:39collaboration of any sort between
51:41our two principal investigators
51:42and the FDA vaccine biologics
51:44branch branch or the CDC.
51:50Well I'll let it I'll just
51:52say we are I I haven't talked
51:54specifically with the vaccine brands.
51:56I mean I think we need to generate
51:58some insights that we want to share
52:00in order to be able to do that.
52:01But we have a lot of discussions back
52:03and forth with CDC and other groups.
52:05I haven't spoken specifically
52:06with the vaccine group.
52:07I don't know Kiko.
52:08I think we don't have any results
52:11yet to share only but I will I'm
52:13I say publicly all the time that
52:14you know I know that there are
52:16people who are suffering who had
52:18symptoms developed soon after they
52:19got the vaccine and we need to
52:21understand that and and by the way
52:23like I said two things can be true.
52:25The vaccines can be on average
52:27beneficial for populations and have
52:29saved millions of lives and and it
52:31still can be true that there are
52:32people who have been injured by
52:33them and so we shouldn't be afraid
52:35to look into it but we we need
52:37to generate some knowledge about
52:39this so that we can provide the
52:40insight and and and also I just
52:42think the idea that people
52:46both along COVID and for vaccine injury.
52:48We just need to help advocate
52:51for understanding about what
52:53people's lives are like.
52:54Because I just think people who
52:56aren't experiencing what you all
52:58are experiencing have so little
52:59ability to to really appreciate it.
53:01And I don't think we have the full
53:04ability because we're not living it.
53:05But we've heard from so many people
53:07that you know we've internalized a
53:09lot of what people have experienced
53:11and I'll keep going if you
53:12any comment to that question.
53:14I mean, yeah, thanks to the my
53:16participation in this group,
53:18I I I've now recently gotten a
53:20lot of interest from newspaper
53:23reporters interested in covering
53:25why or or how some people are
53:28suffering from post vaccine issues.
53:30And I I'm not afraid to
53:34speak about this issue.
53:35As I told you all like I'm
53:38a vaccine researchers,
53:39we've been trying to develop safe and
53:42effective vaccines for the last 20 years.
53:44But I also understand that a small
53:46number of people are being affected
53:48by the vaccines and this is a real
53:50biological issue that needs to be studied.
53:53So there will be hopefully more
53:56coverage and more sort of light
53:59shining on on this group of people
54:02because I think you know it's even
54:04harder than having long COVID.
54:06Long COVID at least is being
54:08publicly recognized and discussed.
54:10But post vaccine injury issues are very
54:13little discussion is going on and I
54:16think that it's time to change that.
54:18And I think this lesson study
54:20will allow us to have the right
54:22kind of insights to share with
54:23the world about this disease.
54:25And I think that's a strong
54:26way to kind of communicate with
54:28the public what's going on.
54:29Yeah.
54:34Well, let me just say we're at at the hour.
54:35I want to thank everyone.
54:36I want to thank the the, the,
54:38the Hugo team for saying stuff,
54:40Kindred team for helping to support us,
54:42our own listen research team.
54:44I want to thank Cesar and Bernali and
54:47especially for me Akiko for who's just
54:49become such a good friend and colleague.
54:51And I so appreciate her involvement
54:53and help And you can hear when
54:55when you hear her talk what how
54:57important it is that we have her as
55:00part of you know in your corner.
55:03Let me say it like that,
55:04that she's in your corners in addition
55:06to be an extraordinary scientist.
55:07So this is really great.
55:11Talia.
55:11I'll hand it back to you.
55:13Thank you everyone for being here.
55:15Thank you to everyone on the Listen team.
55:16This has been another incredible event.
55:19I know that it's your input is
55:21just so helpful for the research
55:23and hearing everything that you
55:24say and especially your research,
55:27your input on the website.
55:29Definitely On the Kindred End,
55:30we're definitely going to take all those
55:32comments into consideration and see how
55:33we can make everything a little bit
55:35more intuitive and easier for everyone.
55:36Because we want you know we want the
55:39process to be as simple as possible so
55:41that you're not you know turned away
55:43from contributing to the research.
55:44I did also want to say I forgot to
55:46mention the beginning but you can
55:47mark your calendars for May 23rd
55:49at 6:00 PM Doctor Wes Eli is going
55:50to be joining us for Kindred Cafe.
55:52So super exciting few months out.
55:54We have some other you know ideas
55:56lined up for the the months in between
55:59but definitely May 23rd is is set.
56:01So yeah, hope to see you there.
56:03And.
56:04Yeah, and I
56:05think we will, I think we will run a
56:07cafe for for the internal vibrations
56:09and tremors toward the end of March to
56:11try to bring together a group and and
56:13figure out what people think about that.
56:15And again, on all these comments,
56:17anything you can give us that helps
56:18us to think about how to encourage
56:20people to fill out questionnaires.
56:22I know what part of this on the UX,
56:23but also to get people connected.
56:25All that will be really welcome on our side.
56:27We want to hear your suggestions about that.
56:30Thank you. Thank you, everyone.
56:33Bye. Bye. Goodbye.