WEBVTT

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(audience applauding)

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- [Dr. Sood] So I'm just gonna
present preliminary results

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of our NICU Universal
Screening Program for CMV

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in a large health system that delivers

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about 40-45,000 babies a year in New York.

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It's not an original study.

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I'm just following the footsteps
of Birmingham, Alabama,

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which has been doing it for many years,

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as well as Pablo Sanchez and
Nationwide Columbus Children's.

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How do I advance the slides?

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Sorry, just a button.

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- [Moderator] Point it,
point it up in the corner.

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- [Dr. Sood] Sorry.

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Okay, thanks, sorry. (chuckles)

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So, so this is just a map
that I showed last CMV meeting

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of our health system.

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It's all over the place
in Downstate New York.

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So about 23 hospitals, about 10,

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those marked with those badges

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are the hospitals that deliver babies.

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And we actually have a
very successful CMV, sorry,

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hearing-targeted program
that's been going on

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for about five years.

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I have a poster about that
in the corner over there.

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And so on the heels of that,

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we decided that we would like
to implement it for our NICUs.

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The background for testing
NICU babies is that

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if you develop, if you
diagnose CMV in the NICU,

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there's a general incidence of cCMV,

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which we don't typically detect.

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Then there's postnatal acquisition
that occurs in the NICU,

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presumably from expressed breast milk.

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But if detected after three weeks of age,

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as often NICU babies
are, then it's impossible

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to distinguish cCMV
from postnatal or pCMV.

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We are increasingly
recognizing and treating CMV

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because of being more comfortable now

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with using PO Valganciclovir,

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even in low birth weight infants.

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And there is considerable
impact from many studies

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on low birth weight infants.

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Just three slides, quick
slides to highlight studies

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you've heard about before.

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This is from Tran and Tatiana's group,

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which is showing literally
the double incidence

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that twice, you know, incidence
in low birth weight infants

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versus very low birth weight infants.

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There is data that now
suggest increased risk

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for failed hearing screen
and other complications

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very low birth infants weight
with postnatally-acquired CMV.

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And I might have skipped
a slide, I'm sorry.

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Oh, my screen went blank.

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I think the slide that did not show is,

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this is a slide from Pablo Sanchez group,

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which is showing that the
timing of hearing testing

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in the NICU is much, is
very late, and therefore

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you do circumvent the chance
to diagnose cCMV at birth.

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So January of this year,
we started the program.

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We included all infants
admitted to the NICU.

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Initially it was basically a
pilot in two biggest NICUs.

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We excluded babies who were
transferred from other hospitals

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after day 21 of life.

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And it's saliva bundled
with colostrum care,

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which is timed two to three
hours after breastfeeds

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in many of these low birth weight infants.

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The implementation, the
test change we implemented

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was substituting a test which was sent out

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to Viracor Eurofins,
which was a saliva PCR

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with now an in-house done
at Northwell Health Labs,

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a lithium Meridian Bioscience
CMV lamp technology assay.

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And we added this to the automatic
admission NICU order set.

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We, like I said, the test
was brought in house,

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and it's dry swab collection,

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which is validated
internally so that the nurse

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at the bedside busy with the
baby doesn't have to fiddle

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with the universal transport medium.

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And after internal validation,

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we're just using the dry swab,

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the COPAN swab shown here,

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the result is available in 12 to 24 hours,

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actually comes every 7:00 AM
in my email inbox, and I have

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to find the time to look
at it quickly every day.

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We started off with a
bang, all these detects.

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So this is actually the third month,

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and we ran into a surprising
series of positive babies,

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which was just not, it
is just not possible.

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So we didn't believe this.

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And it turns out we did have
a problem with the assay,

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at least briefly, where we,
there were false positives.

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And so what our lab director did was,

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whenever there is a detection now

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he reruns the sample, on
the same sample reruns it,

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and if it's negative,

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he reports it as indeterminate
because sort of it is by,

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you know, by convention,
lab reporting convention,

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he can't call it a negative
because there was a positive

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on the record.

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So I know and he knows that
indeterminate means negative,

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but the average clinician
getting the result doesn't know.

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And so often these babies
end up getting a urine PCR

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for confirmation, which
adds to the expense.

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Sorry, so there's..

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So the true positives
are actually been 11,

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and again, I'm showing
my screen just went dark,

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so hopefully it'll come back.

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But it's 11 of the denominator is 761

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over seven and a half months
until the middle of August

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in two large, reporting only
for the two largest NICUs,

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which is at the Children's Hospital

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and North Shore University Hospital.

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And of these only three
were confirmed by urine.

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So we've had three true positives

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in this cohort over
seven and a half months.

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These are the three
babies it happened within,

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again, went blank, but by
recollection I know it's February

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and then two were actually in August.

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So one of them, there they are.

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So one was a 40-week gestation baby

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who just transiently came to the NICU

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for low blood glucose monitoring,

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was appropriate for
gestational age, asymptomatic.

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And her hearing has been
confirmed as normal to date.

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The other two, again, I'm
reading from recollection,

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but it's 37 weekers.

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(panelist chattering)

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Oh, are they back here?

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Okay, good.

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Great, sorry.

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So they were both the
37, 37 and 38 weekers.

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They were SGA, but that
was actually not the reason

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for the testing.

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Again, it was because
there's universal testing.

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So went back and looked
at the clinical criteria

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and again, normal hearing to date.

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So babies, all these babies
are actually, you know,

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have been doing well.

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But that's the preliminary
data we have so far.

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But then I might have
come to a screeching halt

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because just last week our neonatal chief

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reads the email from a
New York State Newborn

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Screening Program, which
you've heard about,

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started last Monday.

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And about two weeks prior,

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they had sent an email blast and said,

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"Oh, we can stop doing urine testing,

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"this universal testing anymore.

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"We don't need it, it's
just too expensive,

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"and the state is gonna
do it for us for free."

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And so I had to over the last
two weeks come up with my list

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of counter-arguments because
I wanted the parallel

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screening program to continue.

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Firstly, it's a study, it's a
New York pilot one-year study.

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The heel stick blood
spot is not going to be

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as sensitive as saliva.

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We know that, no matter
how well it performs.

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And our NICU testing cost
actually doesn't cost,

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to my knowledge, the neonatology
department any money.

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It's bundled into the lab
reimbursement from insurance,

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and the lab hasn't objected yet.

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Swab collection has become part

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of the routine workflow
for the admitting nurse.

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It literally takes 10 seconds.

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And I think we will reintroduce confusion

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for the primary clinician in terms of,

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you know, targeted testing.

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And we will go back to missing babies

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with soft signs including some SGA babies.

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So if anybody has any
suggestions that I can take back

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to argue back with my
neonatal chief, let me know.

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My last slide is just what
I perceive as the benefits,

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screening benefits for clinical care

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if you have a universal NICU program.

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We need to understand
congenital CMV at birth.

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We need to use that baseline
to understand postnatal CMV

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acquisition and establish better protocols

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for monitoring and treatment.

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Thank you.

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(audience applauding)

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- [Dr. Page] Well, I want to
express my gratitude to be able

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to represent my group
to talk about our study

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that we've worked on.

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And I know that eight minutes

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will strain my struggles with brevity.

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So those are our great
people that worked on this.

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We have some other presentations
at this conference as well.

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We had funding from the Ear Foundation

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and the Arizona Community
Foundation and from Midwestern.

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And I do wanna acknowledge
some assistance that we got

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from Dignity Healthcare, who
helped facilitate our project.

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So this started with a group
called Stop CMV Arizona.

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You may have heard a little
discussion of that already today

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as an advocacy and education group.

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And as this is our first real
foray into clinical science,

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as we started discussing
what could be done

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in Arizona to move this forward.

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We started with the current
CMV data in Arizona.

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And it looks like this.

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So, so little is known about
our incidence in Arizona

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or anything that's going on

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because there are no screening
programs and there are not

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even any hospital-based
screening programs.

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And so we had to begin somewhere,

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and we decided to start with a pilot study

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of testing healthy newborns.

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So the main goal was to
demonstrate feasibility

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of universal screening and
then some secondary goals

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about beginning to gather data
and to establish a protocol

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that would let us scale that up and use it

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for a larger network-wide
and then statewide effort.

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So we started by assembling
a consortium of key players,

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and this was crucial to what
we were trying to accomplish.

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So we started with our group,

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but we began to put together
funders and hospitals

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and universities and all
these different people

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who had interest in this area

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so that we had all the expertise we needed

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and all the resource we
needed to get it done.

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And this may be the most important part

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of our project today,

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is to talk about the
collaboration that we were able

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to put together with all of
these different institutions.

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So I do want to talk about
the data that we gained,

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but that's less important
I think in this early stage

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of our development compared
to the process and the people.

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So we had to start with very basic things.

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So it turns out that our hospital does not

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have the instruments to run CMV.

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They were all being sent out.

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So our CMV PCRs were going elsewhere.

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We determined that when we started trying

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to set up this project.

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So we began to look at bringing
the instruments in from some

00:10:51.630 --> 00:10:53.160
of the companies that are here today

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and look if we could
accomplish that protocol.

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If not, then we need to have
it run at another institution,

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which means we have to
decide how the swabs

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get from one place to another

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and how the data gets
from one place to another.

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So we had to build data-sharing agreements

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between the institutions.

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As you might know,

00:11:08.220 --> 00:11:09.930
those of you who work at
academic institutions,

00:11:09.930 --> 00:11:11.654
people are very picky or
institutions are very picky

00:11:11.654 --> 00:11:14.460
about where their data goes
and who gets access to it.

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So all of this took time.

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We had to educate the clinical providers

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about even what the diagnosis
is and why we were doing it.

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And then a workflow for newborns
who were testing positive

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so we had a place to take them
once we had those results.

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We gathered a lot of information,
and we had a great deal

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of discussion about what we would need

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and the information we need to gather.

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To give you a timeframe
here, we really got together

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to discuss this project just
as the pandemic was setting on.

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And worked through some
of the challenges of that,

00:11:41.370 --> 00:11:43.890
submitted our initial IRB

00:11:43.890 --> 00:11:47.430
or had acceptance of
our IRB in May of 2021.

00:11:47.430 --> 00:11:50.160
And we started gathering
data in November of 2022.

00:11:50.160 --> 00:11:53.130
So that's how long it took to
put all the pieces together

00:11:53.130 --> 00:11:56.940
in our system that has not
been prepared for this.

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So here are our results.

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We have, that looks like
an old slide actually.

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Sorry about that.

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Here's our results, slightly larger.

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We screened 254 infants and
had, or we enrolled 254.

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We screened 250 successfully.

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They were essentially even
between male and female,

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mostly white.

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We had a wide range of birth weight.

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These were, no one was
extremely low birth weight

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because we only screened healthy newborns.

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This did not go into our
NICU or special care nursery.

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We had, 57% had a high school
diploma or less in education.

00:12:31.860 --> 00:12:34.702
173 had siblings at home.

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We looked at that as a risk factor

00:12:36.172 --> 00:12:39.033
for CMV exposure to the parents.

00:12:40.080 --> 00:12:42.180
Three infants' primary
address was in Mexico,

00:12:42.180 --> 00:12:44.460
which is a concern for follow-up.

00:12:44.460 --> 00:12:46.680
When we look at the actual
data that we collected,

00:12:46.680 --> 00:12:48.360
two of our swabs were positive.

00:12:48.360 --> 00:12:51.540
One of those was confirmed on urine PCR.

00:12:51.540 --> 00:12:53.716
11 of our subjects total
failed their hearing screening,

00:12:53.716 --> 00:12:55.710
all of whom were CMV negative.

00:12:55.710 --> 00:12:58.447
And our two positive swabs were both,

00:12:58.447 --> 00:13:00.363
had normal hearing screening.

00:13:02.490 --> 00:13:03.867
We looked at pregnancy complications,

00:13:03.867 --> 00:13:06.739
and you can see a variety of things.

00:13:06.739 --> 00:13:08.220
When we look at things that may be

00:13:08.220 --> 00:13:10.547
specifically associated
with congenital CMV,

00:13:10.547 --> 00:13:12.780
there were no reported serious illnesses

00:13:12.780 --> 00:13:14.940
during pregnancy by any of the mothers.

00:13:14.940 --> 00:13:16.440
And we had zero patients

00:13:16.440 --> 00:13:17.940
that had intrauterine growth restriction.

00:13:17.940 --> 00:13:20.130
Again, this is in large
part because we were looking

00:13:20.130 --> 00:13:22.023
at a healthy baby population.

00:13:23.430 --> 00:13:24.810
So our successes.

00:13:24.810 --> 00:13:27.180
So we were able to demonstrate
that we could do this,

00:13:27.180 --> 00:13:28.740
and that was our primary goal.

00:13:28.740 --> 00:13:31.050
We put together a process that allowed us

00:13:31.050 --> 00:13:33.652
to screen all of these babies
at a large birthing center

00:13:33.652 --> 00:13:36.270
in Arizona, something that
hasn't been done before.

00:13:36.270 --> 00:13:37.890
We put together a data-sharing agreement

00:13:37.890 --> 00:13:42.840
that is already starting to
benefit other parts of our,

00:13:42.840 --> 00:13:44.862
the interactions between our hospitals,

00:13:44.862 --> 00:13:47.765
as others have worked
on research projects.

00:13:47.765 --> 00:13:50.400
And then we put together a
network of interested people.

00:13:50.400 --> 00:13:53.130
So now we have a group of institutions

00:13:53.130 --> 00:13:55.809
and individuals who all have
interest in CMV testing,

00:13:55.809 --> 00:13:59.760
education advocacy, and
that is gonna be a huge

00:13:59.760 --> 00:14:00.903
step forward for us.

00:14:01.890 --> 00:14:05.040
As was mentioned in Dr.
Muldoon's talk earlier,

00:14:05.040 --> 00:14:07.740
as part of what this
organization has done,

00:14:07.740 --> 00:14:08.970
not particularly this study,

00:14:08.970 --> 00:14:13.770
we have had CMV Awareness
Month in the month of June

00:14:13.770 --> 00:14:14.940
for the last four years in a row.

00:14:14.940 --> 00:14:18.330
Even with our differing
political parties as governors,

00:14:18.330 --> 00:14:19.163
we've been able to maintain that,

00:14:19.163 --> 00:14:21.870
and it looks like we'll be
able to continue to do that.

00:14:21.870 --> 00:14:22.830
Limitations of our studies.

00:14:22.830 --> 00:14:23.970
This is a small sample size.

00:14:23.970 --> 00:14:25.710
Obviously, this doesn't
give us a lot of information

00:14:25.710 --> 00:14:27.234
about incidence in our state.

00:14:27.234 --> 00:14:29.850
This is more of a proof of concept study.

00:14:29.850 --> 00:14:32.010
So we also screened only healthy infants.

00:14:32.010 --> 00:14:33.510
So we need to adapt our protocol

00:14:33.510 --> 00:14:35.250
if we're gonna include NICU babies,

00:14:35.250 --> 00:14:36.540
as you heard some of those challenges

00:14:36.540 --> 00:14:38.040
in the previous presentation.

00:14:38.040 --> 00:14:39.240
And then this was a convenient sample.

00:14:39.240 --> 00:14:42.360
That is, we did not test every
single baby that was born,

00:14:42.360 --> 00:14:44.700
in part because of the
financial resources.

00:14:44.700 --> 00:14:46.991
So in order to pay someone
to do this on the weekends,

00:14:46.991 --> 00:14:49.140
we would need to pick up some extra money.

00:14:49.140 --> 00:14:51.990
So we only collected babies that were born

00:14:51.990 --> 00:14:53.400
and available during the week.

00:14:53.400 --> 00:14:56.220
So that all needs to be
adapted for a larger project.

00:14:56.220 --> 00:14:58.500
So where we go now is
to expand that testing

00:14:58.500 --> 00:15:01.230
to additional sites in our
network and then eventually

00:15:01.230 --> 00:15:03.450
outside our network to
become a statewide project.

00:15:03.450 --> 00:15:05.760
We're gonna need to adapt
our protocol, and ultimately

00:15:05.760 --> 00:15:08.940
we hope to have enough data
to be able to present this

00:15:08.940 --> 00:15:11.850
to healthcare and legislative leaders

00:15:11.850 --> 00:15:14.163
in our state to make some changes.

00:15:15.330 --> 00:15:16.470
That is our website.

00:15:16.470 --> 00:15:18.900
You're welcome to scan that
code or talk to any of us

00:15:18.900 --> 00:15:19.795
about what we're doing.

00:15:19.795 --> 00:15:20.820
We welcome that.

00:15:20.820 --> 00:15:22.231
Thank you for the opportunity to present.

00:15:22.231 --> 00:15:25.398
(audience applauding)

00:15:30.570 --> 00:15:31.710
- [Dr. Rosebrock] Hello, everyone.

00:15:31.710 --> 00:15:33.540
Thank you to the organizers
for having me today.

00:15:33.540 --> 00:15:36.750
My name is Tracy Rosebrock,
and I'm a professor of biology

00:15:36.750 --> 00:15:39.180
and health sciences at Stonehill College.

00:15:39.180 --> 00:15:41.190
I'm new to the CMV community.

00:15:41.190 --> 00:15:43.770
I've been a microbiologist
for 20 years working on

00:15:43.770 --> 00:15:47.529
basic biology of how bacteria
and viruses infect people.

00:15:47.529 --> 00:15:51.480
I came to CMV in 2020 is when
I first became aware of it.

00:15:51.480 --> 00:15:54.060
I had never heard of it before,
and I have been pregnant.

00:15:54.060 --> 00:15:55.170
Never heard of it.

00:15:55.170 --> 00:15:58.170
And I was floored that this was a thing.

00:15:58.170 --> 00:16:00.390
Like I was absolutely flabbergasted.

00:16:00.390 --> 00:16:02.220
So I shifted my research.

00:16:02.220 --> 00:16:04.650
I now work on CMV in the lab.

00:16:04.650 --> 00:16:08.340
And I also decided, "Okay,
lab is fun, I love lab,"

00:16:08.340 --> 00:16:10.620
but I really wanted to have
some skills in public health,

00:16:10.620 --> 00:16:11.820
especially around advocacy.

00:16:11.820 --> 00:16:14.910
So I started an MPH,
Master's in Public Health.

00:16:14.910 --> 00:16:16.590
This summer I was finishing my MPH,

00:16:16.590 --> 00:16:18.210
I needed a practicum experience.

00:16:18.210 --> 00:16:22.200
I had just come across in my
feed a paper by Karen Fowler?

00:16:22.200 --> 00:16:23.460
This is amazing!

00:16:23.460 --> 00:16:26.370
So I thought, "I'll just
email her and that'll work."

00:16:26.370 --> 00:16:28.471
And it did, she wrote me back.

00:16:28.471 --> 00:16:30.360
She was truly the kindest person,

00:16:30.360 --> 00:16:32.010
has been a wonderful mentor.

00:16:32.010 --> 00:16:34.860
So we've come up with this
project to evaluate the digital

00:16:34.860 --> 00:16:37.020
impact of National CMV Awareness Month,

00:16:37.020 --> 00:16:39.947
which basically we ask what's
happening on social media.

00:16:39.947 --> 00:16:42.510
(chuckles) So just to
anchor us a little bit,

00:16:42.510 --> 00:16:44.940
what is National CMV Awareness month?

00:16:44.940 --> 00:16:49.940
It is, in 2011, this was actually
mandated by the US Senate

00:16:49.980 --> 00:16:51.390
that June would be recognized

00:16:51.390 --> 00:16:53.280
as National CMV Awareness Month,

00:16:53.280 --> 00:16:54.720
and it would be an annual event.

00:16:54.720 --> 00:16:57.371
And they explicitly
state, "To raise awareness

00:16:57.371 --> 00:16:59.767
"of the dangers of cytomegalovirus

00:16:59.767 --> 00:17:03.987
"and to reduce the occurrence
of congenital CMV infection."

00:17:05.400 --> 00:17:06.480
So how did we do this?

00:17:06.480 --> 00:17:08.490
Really, I'm gonna walk you
through two study questions.

00:17:08.490 --> 00:17:12.293
The first one was, did CMV
messaging on social media,

00:17:12.293 --> 00:17:15.510
did it change due to
National CMV Awareness Month?

00:17:15.510 --> 00:17:16.706
And how do we do this?

00:17:16.706 --> 00:17:18.769
So we looked at social media because there

00:17:18.769 --> 00:17:23.430
are 5 billion users of social
media across the globe.

00:17:23.430 --> 00:17:27.180
90% of US adults use
social media an average

00:17:27.180 --> 00:17:29.400
of 2.5 hours per day.

00:17:29.400 --> 00:17:33.330
That makes this a powerful
public health platform.

00:17:33.330 --> 00:17:37.740
It is used widely, it is
democratic, and it is free.

00:17:37.740 --> 00:17:38.640
It's amazing.

00:17:38.640 --> 00:17:41.970
So we used social listening, which is a,

00:17:41.970 --> 00:17:44.100
I could tell you all about
that in my poster tomorrow,

00:17:44.100 --> 00:17:45.450
but we used social media listening.

00:17:45.450 --> 00:17:47.700
We looked at three different platforms.

00:17:47.700 --> 00:17:49.413
So what's on Twitter, or X,
whatever you wanna call it,

00:17:49.413 --> 00:17:52.320
Instagram and TikTok.

00:17:52.320 --> 00:17:55.110
We then evaluated, pulled all those posts

00:17:55.110 --> 00:17:58.560
using five hashtags that
were used that we kind of

00:17:58.560 --> 00:18:01.080
figured out were used by a
bunch of different stakeholders.

00:18:01.080 --> 00:18:05.075
So we used the hashtag StopCMV, cCMV, CMV,

00:18:05.075 --> 00:18:07.473
CMVAwareness, or #Cytomegalovirus.

00:18:08.370 --> 00:18:12.630
We pulled those for June,
which was CMV Awareness Month.

00:18:12.630 --> 00:18:14.783
And then we also looked just before in May

00:18:14.783 --> 00:18:16.770
and just after in July.

00:18:16.770 --> 00:18:20.010
So before in May to ask, did
things change from May to June?

00:18:20.010 --> 00:18:22.064
And then did, if we did have a change,

00:18:22.064 --> 00:18:24.978
were we able to maintain
that change through July?

00:18:24.978 --> 00:18:27.660
So we collected those
posts, we indexed by author,

00:18:27.660 --> 00:18:30.240
and then we also evaluated by post intent,

00:18:30.240 --> 00:18:32.040
which I'll get to in a second.

00:18:32.040 --> 00:18:33.870
So I'm only gonna show you
a little bit of this data

00:18:33.870 --> 00:18:36.990
because it is a lot of data and
this is how far I've gotten.

00:18:36.990 --> 00:18:40.140
So, so far I've looked at Twitter/X posts.

00:18:40.140 --> 00:18:42.291
We asked, "Is there a change
in the number of posts

00:18:42.291 --> 00:18:45.930
"that were posted, increase,
decrease or no change?"

00:18:45.930 --> 00:18:48.630
And then we also asked
about the change in intent.

00:18:48.630 --> 00:18:51.030
So the CDC lists on their website

00:18:51.030 --> 00:18:54.060
for National CMV Awareness
Month three objectives.

00:18:54.060 --> 00:18:57.660
One, to increase awareness
of congenital CMV.

00:18:57.660 --> 00:19:01.050
So to be specific, congenital CMV.

00:19:01.050 --> 00:19:03.210
To increase education, public education

00:19:03.210 --> 00:19:05.199
around congenital CMV, and to increase

00:19:05.199 --> 00:19:08.550
healthcare provider education
on early signs and symptoms

00:19:08.550 --> 00:19:12.410
of congenital CMV to get to
early inventions, to create,

00:19:12.410 --> 00:19:15.930
or to get to earlier, to get
to interventions earlier.

00:19:15.930 --> 00:19:19.590
So first, first question, did
the number of tweets change?

00:19:19.590 --> 00:19:20.940
CMV-related tweets change.

00:19:20.940 --> 00:19:22.830
Yes, so these are all five hashtags

00:19:22.830 --> 00:19:24.390
you can see are grouped as columns.

00:19:24.390 --> 00:19:27.510
And then they're color coded
by month: May, June and July.

00:19:27.510 --> 00:19:29.340
And you can see for each of the hashtags

00:19:29.340 --> 00:19:30.480
we do see an increase.

00:19:30.480 --> 00:19:32.130
That orange dotted line kind of helps

00:19:32.130 --> 00:19:33.933
you show the difference from May to June.

00:19:33.933 --> 00:19:35.612
That's fantastic.

00:19:35.612 --> 00:19:38.640
The bad news is that
this wasn't maintained.

00:19:38.640 --> 00:19:40.470
So once we get to July, we see a dip.

00:19:40.470 --> 00:19:42.155
Now, this could be
everybody went on vacation.

00:19:42.155 --> 00:19:44.850
This could be Elon Musk twittering around

00:19:44.850 --> 00:19:46.470
and doing X-ing and whatever he was doing.

00:19:46.470 --> 00:19:47.940
So we're not exactly sure.

00:19:47.940 --> 00:19:50.520
But we, I'm pretty sure we
didn't maintain that momentum.

00:19:50.520 --> 00:19:52.700
But the good news is we
did have some momentum.

00:19:52.700 --> 00:19:54.674
Okay, so did the intent change.

00:19:54.674 --> 00:19:58.200
I've only been able to dig
through the StopCMV hashtag

00:19:58.200 --> 00:20:00.480
so far, of which there
were very, very many.

00:20:00.480 --> 00:20:02.310
And it's manual work.

00:20:02.310 --> 00:20:06.000
You have to read the tweets,
which takes a long time.

00:20:06.000 --> 00:20:07.200
So reading the tweets,

00:20:07.200 --> 00:20:09.810
I can say of the StopCMV in hashtags,

00:20:09.810 --> 00:20:12.840
only about half of them
actually explicitly talk

00:20:12.840 --> 00:20:15.180
about congenital CMV.

00:20:15.180 --> 00:20:16.560
So of those half we did see,

00:20:16.560 --> 00:20:19.740
we went from 40% in May to 50% of those,

00:20:19.740 --> 00:20:23.220
50% of those tweets actually
talking about congenital CMV.

00:20:23.220 --> 00:20:26.460
So we increased congenital
CMV, which was fabulous.

00:20:26.460 --> 00:20:30.005
And then most of those do a
great job of showing awareness.

00:20:30.005 --> 00:20:33.900
Alerting people to the fact
that congenital CMV does exist.

00:20:33.900 --> 00:20:37.350
However, most of them
don't have anything to do

00:20:37.350 --> 00:20:39.420
with education, and we don't do anything

00:20:39.420 --> 00:20:42.540
to educate healthcare
providers with that hashtag.

00:20:42.540 --> 00:20:44.460
The other thing I wanted
to look at was sentiment.

00:20:44.460 --> 00:20:47.280
Are these posts happy, sad, neutral?

00:20:47.280 --> 00:20:48.750
What would the audience feel?

00:20:48.750 --> 00:20:51.500
We can say that posts that
have education or awareness

00:20:51.500 --> 00:20:54.734
in them are more likely to be
scored negative by algorithms,

00:20:54.734 --> 00:20:57.083
but they're also more
likely to induce engagement

00:20:57.083 --> 00:20:58.260
with the audience.

00:20:58.260 --> 00:21:00.300
So don't be afraid to add education.

00:21:00.300 --> 00:21:01.939
It may feel dry, it may feel boring,

00:21:01.939 --> 00:21:05.162
but you'll get more likes
and you'll get more retweets.

00:21:05.162 --> 00:21:07.147
Then we also asked, "Did public interest

00:21:07.147 --> 00:21:08.850
"in congenital CMV change?"

00:21:08.850 --> 00:21:11.167
And so we don't, can't
really go ask everybody,

00:21:11.167 --> 00:21:12.990
"Did your interest change,
did your interest change?"

00:21:12.990 --> 00:21:16.530
So instead what we did was
we looked at Google searches.

00:21:16.530 --> 00:21:18.450
90% of US adults use Google.

00:21:18.450 --> 00:21:20.790
75% of US adults use the internet

00:21:20.790 --> 00:21:22.260
to look for healthcare information.

00:21:22.260 --> 00:21:23.460
So I looked for Google searches

00:21:23.460 --> 00:21:25.110
using a tool called Google Trends.

00:21:25.110 --> 00:21:25.943
Same thing.

00:21:25.943 --> 00:21:27.360
We looked at the three months.

00:21:27.360 --> 00:21:30.330
Google indexes searches based
on their topical categories

00:21:30.330 --> 00:21:31.560
of which there were two.

00:21:31.560 --> 00:21:33.450
I looked at cytomegalovirus infection,

00:21:33.450 --> 00:21:34.590
which is all the way to the right,

00:21:34.590 --> 00:21:36.870
and then congenital
cytomegalovirus infection,

00:21:36.870 --> 00:21:38.250
which is all the way to the left.

00:21:38.250 --> 00:21:40.710
And so we can see with
the little orange stars

00:21:40.710 --> 00:21:42.330
that we did have a significant increase

00:21:42.330 --> 00:21:46.781
in public interest in or
searches for CMV infection.

00:21:46.781 --> 00:21:51.150
But we had no meaningful change
in congenital CMV infection.

00:21:51.150 --> 00:21:52.927
So conclusions, we have more tweets.

00:21:52.927 --> 00:21:55.650
We have more tweets that show awareness,

00:21:55.650 --> 00:21:57.017
more tweets that show education.

00:21:57.017 --> 00:22:00.450
We are not doing anything to
educate providers necessarily

00:22:00.450 --> 00:22:04.140
with this #StopCMV, and
public interest did change

00:22:04.140 --> 00:22:05.730
for cytomegalovirus infection,

00:22:05.730 --> 00:22:08.820
but not congenital
cytomegalovirus infection.

00:22:08.820 --> 00:22:10.492
Thanks, hope to see you at my poster.

00:22:10.492 --> 00:22:11.510
Take care.

00:22:11.510 --> 00:22:14.677
(audience applauding)

00:22:23.310 --> 00:22:25.470
- [Dr. Piper] Good afternoon.

00:22:25.470 --> 00:22:27.397
So here's a quote from Lincoln.

00:22:27.397 --> 00:22:29.467
"If we could first know where we are

00:22:29.467 --> 00:22:31.177
"and whither we are tending,

00:22:31.177 --> 00:22:34.590
"we could then better judge
what to do and how to do it."

00:22:34.590 --> 00:22:37.066
So this is, who knew Lincoln
was an epidemiologist

00:22:37.066 --> 00:22:39.540
first of all.
(audience chuckles)

00:22:39.540 --> 00:22:42.570
And this is a much more
elegant way of saying

00:22:42.570 --> 00:22:45.920
that we need information before
we can best know what to do,

00:22:45.920 --> 00:22:47.790
how to proceed.

00:22:47.790 --> 00:22:50.220
And isn't it kind of
jarring to see a picture

00:22:50.220 --> 00:22:51.240
of him in color?

00:22:51.240 --> 00:22:53.550
I just think it's kind of almost creepy,

00:22:53.550 --> 00:22:56.793
just to see what he probably
looked like otherwise.

00:22:59.340 --> 00:23:01.680
So we need information about
the incidence and occurrence

00:23:01.680 --> 00:23:04.440
of congenital CMV in Iowa
so we can know the best way

00:23:04.440 --> 00:23:08.100
to develop and implement
prevention and treatment efforts.

00:23:08.100 --> 00:23:10.950
And our aim is to understand
the impact of cCMV

00:23:10.950 --> 00:23:13.650
on Iowa families and to build
comprehensive prevention

00:23:13.650 --> 00:23:15.540
and intervention efforts.

00:23:15.540 --> 00:23:17.250
And you're not gonna see a
lot of stuff on my slides

00:23:17.250 --> 00:23:19.710
'cause I want you to go look at my poster.

00:23:19.710 --> 00:23:22.653
Number 22. (chuckles)

00:23:24.360 --> 00:23:28.200
Currently, Iowa law requires
newborn care providers

00:23:28.200 --> 00:23:30.570
to test newborns that fail
their newborn hearing screening

00:23:30.570 --> 00:23:31.680
for cCMV.

00:23:31.680 --> 00:23:34.290
So we do targeted screening in Iowa.

00:23:34.290 --> 00:23:37.440
And the Iowa Department of
Health and Human Services,

00:23:37.440 --> 00:23:39.574
formerly the Iowa
Department of Public Health,

00:23:39.574 --> 00:23:42.750
we don't have any authority
to collect information

00:23:42.750 --> 00:23:45.600
about cCMV testing that
is done by the provider.

00:23:45.600 --> 00:23:49.170
So there's no reporting
mechanism that we can follow up

00:23:49.170 --> 00:23:51.270
and see what's going on with this testing.

00:23:55.050 --> 00:23:58.500
So how do we get the cCMV data?

00:23:58.500 --> 00:24:01.740
One way that we thought to
gather data about CMV occurrence

00:24:01.740 --> 00:24:06.300
in Iowa was to see if the
Director of Iowa HHS would

00:24:06.300 --> 00:24:10.890
issue a temporary reporting
order for CMV test results,

00:24:10.890 --> 00:24:13.590
similar to what was issued
in probably most states

00:24:13.590 --> 00:24:16.053
and jurisdictions for COVID-19 reporting.

00:24:23.310 --> 00:24:24.143
There we go.

00:24:24.143 --> 00:24:25.230
And our plan worked.

00:24:25.230 --> 00:24:27.210
We approached her, and
she agreed to do this.

00:24:27.210 --> 00:24:30.817
And her order says, in part,

00:24:30.817 --> 00:24:32.677
"As the Director of the
Iowa Department of Health

00:24:32.677 --> 00:24:35.347
"and Human Services, I
temporarily designate

00:24:35.347 --> 00:24:37.496
"laboratory results for CMV testing,

00:24:37.496 --> 00:24:40.837
"including but not limited to
testing conducted on saliva,

00:24:40.837 --> 00:24:44.820
"urine, blood, or blood
spots as reportable in Iowa."

00:24:44.820 --> 00:24:45.757
And then it further says,

00:24:45.757 --> 00:24:47.827
"All Iowa healthcare providers and public,

00:24:47.827 --> 00:24:50.497
"private, and hospital
laboratories are required

00:24:50.497 --> 00:24:52.834
"to report all laboratory
CMV testing results

00:24:52.834 --> 00:24:55.207
"to the Department within three days

00:24:55.207 --> 00:24:58.027
"of the test being resulted.

00:24:58.027 --> 00:25:00.037
"And reports must be made electronically

00:25:00.037 --> 00:25:02.587
"through the Iowa Disease
Surveillance System

00:25:02.587 --> 00:25:06.180
"or other electronic means as
directed by the Department."

00:25:06.180 --> 00:25:09.840
So starting in September
1st, this was enacted,

00:25:09.840 --> 00:25:12.649
and it requires all CMV test results.

00:25:12.649 --> 00:25:13.482
The mic?

00:25:14.700 --> 00:25:16.860
Short people problems.
(audience chuckles)

00:25:16.860 --> 00:25:17.693
Okay.

00:25:18.870 --> 00:25:21.090
So we started September
1st, and it requires

00:25:21.090 --> 00:25:25.531
all CMV test results, positive
and negative for all ages.

00:25:25.531 --> 00:25:28.500
And we know we might be
careful what we wish for

00:25:28.500 --> 00:25:31.953
when we're getting reports from all ages.

00:25:33.669 --> 00:25:35.970
The epidemiologist will sort through,

00:25:35.970 --> 00:25:38.670
will parse out those records
for us so we can narrow it

00:25:38.670 --> 00:25:39.810
down to something that,

00:25:39.810 --> 00:25:42.600
a little more interested in for cCMV.

00:25:42.600 --> 00:25:45.090
And right now we're just
requesting PCR results.

00:25:45.090 --> 00:25:48.003
We're not looking at
antibody testing results.

00:25:49.770 --> 00:25:51.180
So the disease are reported

00:25:51.180 --> 00:25:53.970
to our disease surveillance system.

00:25:53.970 --> 00:25:56.460
They have an application called Smart Lab.

00:25:56.460 --> 00:25:58.050
And similar to how labs

00:25:58.050 --> 00:26:01.080
report other infectious disease
results like tuberculosis

00:26:01.080 --> 00:26:02.520
to the health department.

00:26:02.520 --> 00:26:05.190
And then the Smart Lab
epidemiologist will create a file

00:26:05.190 --> 00:26:08.100
to be picked up via secure
file transfer protocol

00:26:08.100 --> 00:26:11.220
by the Iowa Registry for
Congenital and Inherited Disorders.

00:26:11.220 --> 00:26:13.320
And I gotta give a shout
out to Dr. Paul Romitti.

00:26:13.320 --> 00:26:15.690
He's our director of our registry,

00:26:15.690 --> 00:26:18.750
and he leads the team on that effort.

00:26:18.750 --> 00:26:21.120
And then that is one of
our surveillance systems

00:26:21.120 --> 00:26:22.620
for reportable conditions.

00:26:22.620 --> 00:26:25.050
And then the data will also
be made available for matching

00:26:25.050 --> 00:26:27.300
with our Iowa Newborn
Screening Information System,

00:26:27.300 --> 00:26:29.940
which is our EHDI hearing
screening data system.

00:26:29.940 --> 00:26:32.177
And another shout out to
Tammy up in the nosebleeds,

00:26:32.177 --> 00:26:36.153
our EHDI coordinator or director
of our EDHI program, so.

00:26:40.140 --> 00:26:42.810
So what do we plan to
do with the information?

00:26:42.810 --> 00:26:46.050
Well, the registry will abstract
the data to develop reports

00:26:46.050 --> 00:26:47.900
about the incidence and occurrence of CMV

00:26:47.900 --> 00:26:50.520
in the Iowa population
with special attention

00:26:50.520 --> 00:26:52.890
to potential cCMV cases.

00:26:52.890 --> 00:26:55.230
And then the EDHI program
can also use the information

00:26:55.230 --> 00:26:57.060
to follow up on those
newborns who received the

00:26:57.060 --> 00:27:00.330
required CMV testing
and those that did not.

00:27:00.330 --> 00:27:02.160
And we hope to have some
initial outcomes data

00:27:02.160 --> 00:27:05.977
through the surveillance follow
up process as we get going.

00:27:05.977 --> 00:27:10.050
I do have some current info,
very just basic information.

00:27:10.050 --> 00:27:12.920
So we started this in
September, September 1st,

00:27:12.920 --> 00:27:17.760
and we have 54 tests
on women ages 15 to 49,

00:27:17.760 --> 00:27:19.290
so reproductive years.

00:27:19.290 --> 00:27:23.130
So 54 women's were tested
in September for CMV.

00:27:23.130 --> 00:27:26.910
And then 92 infants less
than one year of age

00:27:26.910 --> 00:27:29.400
were tested for CMV in September.

00:27:29.400 --> 00:27:33.870
So we will further
dissect that information

00:27:33.870 --> 00:27:36.018
and look to see what those results were

00:27:36.018 --> 00:27:39.360
and if we can match them to refer babies

00:27:39.360 --> 00:27:41.340
that referred on the hearing screening

00:27:41.340 --> 00:27:46.340
and give us some more information,
make Lincoln happy, so.

00:27:46.920 --> 00:27:49.230
And again, a plug for poster number 22.

00:27:49.230 --> 00:27:52.620
It's around the corner
outside out here on the ramp.

00:27:52.620 --> 00:27:53.673
Thank you.

00:27:53.673 --> 00:27:56.840
(audience applauding)

00:28:01.978 --> 00:28:05.145
(panelist chattering)

00:28:06.210 --> 00:28:07.740
- [Speaker] Good afternoon.

00:28:07.740 --> 00:28:10.870
I do not have any slides
to share just the poster

00:28:10.870 --> 00:28:13.810
that is gonna be put up tomorrow.

00:28:13.810 --> 00:28:17.602
And this is, I'm going
to give some background

00:28:17.602 --> 00:28:18.963
about the poster.

00:28:19.800 --> 00:28:24.800
Last year, Suresh and Karen
convened a working group

00:28:26.280 --> 00:28:31.280
for WHO to do a evidence
review on the burden

00:28:31.390 --> 00:28:34.320
of congenital CMV and the opportunities

00:28:34.320 --> 00:28:36.690
for vaccines for low and
middle income countries

00:28:36.690 --> 00:28:38.790
for the World Health Organization.

00:28:38.790 --> 00:28:41.895
And they recruited an international panel.

00:28:41.895 --> 00:28:46.895
Tatiana and I, Soren, were
also part of that panel.

00:28:46.920 --> 00:28:49.020
The report was just published.

00:28:49.020 --> 00:28:53.700
It's now available online
in the journal's vaccines,

00:28:53.700 --> 00:28:55.740
the vaccine value profile for congenital,

00:28:55.740 --> 00:28:58.098
for cytomegalovirus.

00:28:58.098 --> 00:29:02.103
Part of that, we were
supposed to assess the burden.

00:29:03.120 --> 00:29:07.200
One of the questions was how
many deaths are caused by CMV.

00:29:07.200 --> 00:29:08.550
And reviewing the evidence,

00:29:08.550 --> 00:29:11.760
it's really hard to come
up with a good estimate

00:29:11.760 --> 00:29:15.813
of the number of deaths caused
by congenital CMV infection.

00:29:16.800 --> 00:29:18.033
There have been a number of estimates

00:29:18.033 --> 00:29:20.460
that have been published over the years.

00:29:20.460 --> 00:29:24.334
It's very common to say
five to 10% of infants

00:29:24.334 --> 00:29:26.970
with symptomatic, moderately to severe

00:29:26.970 --> 00:29:31.970
symptomatic congenital CMV
die in the neonatal period.

00:29:32.850 --> 00:29:35.880
But the problem, there
are multiple problems.

00:29:35.880 --> 00:29:39.690
One is that a lot of studies
report no infant deaths,

00:29:39.690 --> 00:29:42.480
a lot of prospective studies.

00:29:42.480 --> 00:29:45.690
And so I decided we need
to do a systematic review,

00:29:45.690 --> 00:29:48.600
a comprehensive review of
all the published studies.

00:29:48.600 --> 00:29:52.290
And when you review estimates,
it's not just the numbers,

00:29:52.290 --> 00:29:55.560
but you have to understand
what are the potential threats

00:29:55.560 --> 00:29:57.420
to validity of those estimates.

00:29:57.420 --> 00:29:59.550
What are the potential biases?

00:29:59.550 --> 00:30:04.550
And I use the word bias not
as a criticism of studies,

00:30:04.740 --> 00:30:07.477
but to acknowledge the
inherent limitations

00:30:07.477 --> 00:30:11.259
of different data
sources and study designs

00:30:11.259 --> 00:30:14.820
for coming up with estimates.

00:30:14.820 --> 00:30:18.233
So you can see there's, okay,

00:30:19.320 --> 00:30:21.303
I should mention I have my co-authors.

00:30:22.650 --> 00:30:27.650
So there's Patrick Fleming
and Bill Rawlinson.

00:30:27.840 --> 00:30:30.150
So I originally reached
out to Dr. Rawlinson

00:30:30.150 --> 00:30:32.883
who is also a member
of this working group.

00:30:34.140 --> 00:30:36.570
And she's an expert in perinatal mortality

00:30:36.570 --> 00:30:38.823
and congenital CMV, well known.

00:30:40.890 --> 00:30:45.890
And then recruited Megan
Pesch and one of her students,

00:30:47.220 --> 00:30:49.980
or someone she had worked
with, Patrick Fleming.

00:30:49.980 --> 00:30:51.780
And we put together this poster.

00:30:51.780 --> 00:30:55.357
Megan is responsible for the
two figures that you see,

00:30:56.273 --> 00:30:58.050
and Patrick created the tables.

00:30:58.050 --> 00:31:00.270
There's a manuscript that we're,

00:31:00.270 --> 00:31:01.950
I'm gonna be submitting
the revised version

00:31:01.950 --> 00:31:04.020
to the journal next week.

00:31:04.020 --> 00:31:05.790
Hopefully, it'll be published soon

00:31:05.790 --> 00:31:08.700
with tables listing all of the studies.

00:31:08.700 --> 00:31:11.952
But if you look at the top figure,

00:31:11.952 --> 00:31:15.584
you'll see that there's potential biases

00:31:15.584 --> 00:31:20.430
that can cause
underestimation of mortality.

00:31:20.430 --> 00:31:24.730
There's left truncation bias, is caused

00:31:24.730 --> 00:31:29.730
when you have the events occur
before you begin observing.

00:31:31.080 --> 00:31:33.030
Roughly half of all infant deaths

00:31:33.030 --> 00:31:34.863
occur in the first week of life.

00:31:35.902 --> 00:31:38.610
And generally you do not get a diagnosis

00:31:38.610 --> 00:31:41.640
of congenital CMV until after that.

00:31:41.640 --> 00:31:44.799
So infants who die in
the first days after life

00:31:44.799 --> 00:31:48.480
who had congenital CMV
infection will not get,

00:31:48.480 --> 00:31:51.630
will not have the
diagnosis of congenital CMV

00:31:51.630 --> 00:31:54.240
and those deaths will not be counted.

00:31:54.240 --> 00:31:57.540
And a related bias that's
in epidemiology referred

00:31:57.540 --> 00:32:00.270
to immortal time bias

00:32:00.270 --> 00:32:03.014
is when you're comparing the death rate

00:32:03.014 --> 00:32:05.877
in an exposed group such as congenital CMV

00:32:05.877 --> 00:32:09.540
to other infants who do
not have that exposure.

00:32:09.540 --> 00:32:11.670
And when you have left truncation bias,

00:32:11.670 --> 00:32:16.670
that causes the relative
mortality to be reduced

00:32:17.850 --> 00:32:19.137
in your exposed group.

00:32:19.137 --> 00:32:21.480
And so there's a previous
study I was involved with

00:32:21.480 --> 00:32:26.130
on sickle cell disease where
the phenomena was infants

00:32:26.130 --> 00:32:31.130
with sickle cell disease had
a lower infant mortality rate

00:32:31.530 --> 00:32:34.530
than other infants of the
same racial ethnic background,

00:32:34.530 --> 00:32:36.120
specifically African Americans.

00:32:36.120 --> 00:32:40.447
And people would say, "Oh,
that's because there's such good

00:32:40.447 --> 00:32:43.807
"clinical care for the infants
with sickle cell disease.

00:32:43.807 --> 00:32:45.667
"They're getting such
close clinical attention,

00:32:45.667 --> 00:32:48.300
"that's why their infant
mortality rate is lower."

00:32:48.300 --> 00:32:51.270
But it turned out, no, it
was immortal time bias.

00:32:51.270 --> 00:32:54.120
When we excluded the neonatal deaths,

00:32:54.120 --> 00:32:56.280
the mortality rate for the infants

00:32:56.280 --> 00:32:59.751
with sickle cell anemia
was substantially higher.

00:32:59.751 --> 00:33:04.380
So it's important to be
aware of left truncation bias

00:33:04.380 --> 00:33:08.073
and immortal time bias when
estimating infant mortality.

00:33:09.570 --> 00:33:13.320
The other biases can go in
the other direction is you can

00:33:13.320 --> 00:33:16.904
have ascertainment bias and referral bias

00:33:16.904 --> 00:33:20.280
where the infants who are
most severely affected

00:33:20.280 --> 00:33:22.680
are the ones who are most
likely either to come

00:33:22.680 --> 00:33:26.730
to clinical attention or be reported.

00:33:26.730 --> 00:33:29.370
And so these offsetting biases,

00:33:29.370 --> 00:33:32.310
but bottom line there does appear

00:33:32.310 --> 00:33:35.310
to be an appreciable
burden of infant mortality.

00:33:35.310 --> 00:33:37.529
Not just infant mortality.

00:33:37.529 --> 00:33:40.890
Fetal mortality is also elevated.

00:33:40.890 --> 00:33:45.270
And child mortality is not
just neonatal or infancy,

00:33:45.270 --> 00:33:47.820
that other, children older ages

00:33:47.820 --> 00:33:50.613
are also at greater risk of dying.

00:33:52.380 --> 00:33:55.019
So this, I don't have
any definite answers,

00:33:55.019 --> 00:33:59.430
but this is, so stay tuned for
the publication when you can

00:33:59.430 --> 00:34:01.470
see all of the studies we've reviewed.

00:34:01.470 --> 00:34:04.301
And we need additional studies

00:34:04.301 --> 00:34:08.010
that could get better
answers for this question.

00:34:08.010 --> 00:34:09.369
Thank you.

00:34:09.369 --> 00:34:12.536
(audience applauding)

00:34:19.620 --> 00:34:20.928
- [Dr. Moriuchi] Good afternoon.

00:34:20.928 --> 00:34:24.600
I'm sorry, I have brain fog, not COVID

00:34:24.600 --> 00:34:28.470
because of the jet lag
between here and Japan,

00:34:28.470 --> 00:34:31.680
but I will represent
public health achievement

00:34:31.680 --> 00:34:35.910
by the Japanese Congenital
CMV Study Group as well as a

00:34:35.910 --> 00:34:39.393
contribution by the Patient
Family Association in Japan.

00:34:46.800 --> 00:34:47.853
I declare no COI.

00:34:50.340 --> 00:34:52.290
The TORCH Association or Association

00:34:52.290 --> 00:34:55.110
for Congenital Toxoplasmosis and CMV

00:34:55.110 --> 00:34:57.690
was established in 2012.

00:34:57.690 --> 00:35:02.490
Dr. Tomomi Watanabe is a
founder and a representative,

00:35:02.490 --> 00:35:04.983
and I am a co-founder and a counselor.

00:35:06.990 --> 00:35:11.220
My talk will review these
issues, and our association

00:35:11.220 --> 00:35:13.953
has been deeply involved
in the last three.

00:35:16.590 --> 00:35:20.629
First, a nationwide
retrospective study between 2006

00:35:20.629 --> 00:35:25.629
and 2008 identified 140
cases of symptomatic CMV,

00:35:26.477 --> 00:35:30.540
congenital CMV, accounting
for zero point, I'm sorry,

00:35:30.540 --> 00:35:33.990
0.0044% of all live births.

00:35:33.990 --> 00:35:38.760
But we are sure that that
was an underestimate.

00:35:38.760 --> 00:35:42.303
So we conducted a multicenter
prospective study.

00:35:46.230 --> 00:35:47.063
Oh.

00:35:49.140 --> 00:35:52.200
More than 21,000 urine
specimens were collected

00:35:52.200 --> 00:35:56.617
into filter paper and tested
for CMV DNA by realtime PCR.

00:36:03.335 --> 00:36:08.335
And 66 were confirmed
to be congenital CMV,

00:36:08.760 --> 00:36:11.823
accounting for 0.31% of all live births.

00:36:14.190 --> 00:36:19.190
And 30% among them had either
typical clinical manifestation

00:36:19.890 --> 00:36:23.160
or abnormal brain imaging or both.

00:36:23.160 --> 00:36:28.020
So we calculated that
95% of symptomatic cases

00:36:28.020 --> 00:36:30.483
had been left undiagnosed in Japan.

00:36:32.100 --> 00:36:35.417
A follow-up study found, revealed that 12%

00:36:35.417 --> 00:36:38.220
of initially asymptomatic children

00:36:38.220 --> 00:36:41.193
had late-onset neurological deficit.

00:36:44.700 --> 00:36:46.970
So this is a summary of our clinical

00:36:46.970 --> 00:36:48.690
and developmental neurological studies.

00:36:48.690 --> 00:36:51.907
0.31% of all live births
had congenital CMV.

00:36:55.507 --> 00:36:56.817
And 32% of them had some
kind of clinical problems,

00:36:58.980 --> 00:37:02.373
accounting for 0.1% of all live births.

00:37:05.400 --> 00:37:09.153
The next task was development
of in vitro diagnostics.

00:37:10.260 --> 00:37:12.930
The Industry Academia Collaboration

00:37:12.930 --> 00:37:16.980
developed the isothermal
nucleic acid amplification test

00:37:16.980 --> 00:37:21.497
using the urine specimens
collected within 21 days of life.

00:37:23.040 --> 00:37:25.500
And that was approved for
the definite diagnosis

00:37:25.500 --> 00:37:30.033
of congenital CMV in 2018
by the Ministry of Health.

00:37:32.100 --> 00:37:35.520
For retrospective diagnosis
of congenital CMV,

00:37:35.520 --> 00:37:39.750
we can use either a dried
umbilical cord or a Guthrie card,

00:37:39.750 --> 00:37:42.303
and the former is easily
available in Japan.

00:37:43.590 --> 00:37:47.220
So the study group offers
the diagnosis services

00:37:47.220 --> 00:37:52.140
using dried umbilical cord
specimens for children

00:37:52.140 --> 00:37:56.430
beyond 21 days of life
suspected of congenital CMV

00:37:56.430 --> 00:37:57.543
free of charge.

00:37:59.490 --> 00:38:04.490
The next task was approval
for antiviral treatment.

00:38:06.350 --> 00:38:07.980
In this famous study,

00:38:07.980 --> 00:38:11.373
Valganciclovir started
within one month of age.

00:38:14.880 --> 00:38:17.850
We aimed to get approval
for Valganciclovir

00:38:17.850 --> 00:38:19.233
by the Ministry of Health.

00:38:23.327 --> 00:38:27.810
And we recruited the infant
aged two months or younger.

00:38:27.810 --> 00:38:31.890
And we observed no differences
in hearing efficacy

00:38:31.890 --> 00:38:36.630
between the younger, the
first months of age and the,

00:38:36.630 --> 00:38:39.333
oh, the older, the second
month of age group.

00:38:40.889 --> 00:38:44.400
Sorry for such a big slide,
but efficacy was similar

00:38:44.400 --> 00:38:46.980
between the first month age group

00:38:46.980 --> 00:38:48.300
and the second month age group.

00:38:48.300 --> 00:38:51.990
So we are confident that
we can start Valganciclovir

00:38:51.990 --> 00:38:56.990
beyond 30 days of life,
but by six days of life.

00:38:59.400 --> 00:39:03.903
We are also encouraging the
targeted neonatal CMV screening.

00:39:06.450 --> 00:39:09.150
CMV antibody screening
among pregnant women

00:39:09.150 --> 00:39:11.080
is not very common, but

00:39:13.080 --> 00:39:16.410
CMV test for babies who
could not pass neonatal

00:39:16.410 --> 00:39:18.603
hearing screening is spreading in Japan.

00:39:20.640 --> 00:39:21.473
Oops.

00:39:26.730 --> 00:39:28.680
So our society has been deeply involved

00:39:28.680 --> 00:39:31.443
in these two activities.

00:39:33.256 --> 00:39:35.763
Awareness of congenital CMV is lowest.

00:39:36.720 --> 00:39:37.553
Sorry.

00:39:42.474 --> 00:39:45.960
Awareness of congenital CMV is
lowest among those congenital

00:39:45.960 --> 00:39:47.973
and perinatal infections in Japan.

00:39:49.440 --> 00:39:50.273
Oops.

00:39:50.273 --> 00:39:53.640
So we established the TORCH
Association for patient

00:39:53.640 --> 00:39:56.283
with congenital toxoplasmosis or CMV.

00:39:59.760 --> 00:40:01.653
I'm sorry, automatically moving.

00:40:02.490 --> 00:40:03.783
In 2012.

00:40:04.890 --> 00:40:07.890
We have been doing a lot
of peer support activities

00:40:07.890 --> 00:40:09.063
in various ways.

00:40:10.530 --> 00:40:13.530
We are also doing a lot of
awareness raising activities

00:40:13.530 --> 00:40:15.120
through internet or mass media,

00:40:15.120 --> 00:40:17.790
production and distribution
of educational brochures,

00:40:17.790 --> 00:40:20.793
booths at academic meetings,
and giving lectures.

00:40:25.440 --> 00:40:28.290
These are educational posters
for congenital toxoplasmosis

00:40:28.290 --> 00:40:29.123
and CMV.

00:40:29.123 --> 00:40:31.740
This is another educational posters

00:40:31.740 --> 00:40:33.840
illustrating the transmission route

00:40:33.840 --> 00:40:36.217
and how to prevent infection.

00:40:36.217 --> 00:40:39.957
These educational brochures
for congenital toxoplasmosis

00:40:39.957 --> 00:40:43.808
and CMV, easy to read and understand.

00:40:43.808 --> 00:40:45.960
(speakers chattering)

00:40:45.960 --> 00:40:47.556
And in this brochure,

00:40:47.556 --> 00:40:51.420
we listed 11 notes
important for the prevention

00:40:51.420 --> 00:40:55.083
of the various infection during pregnancy.

00:41:00.361 --> 00:41:03.510
And they are not only for the
prevention of CMV infection

00:41:03.510 --> 00:41:06.840
but also for many other
maternal and fetal infections.

00:41:06.840 --> 00:41:09.510
We used brain words and
the friendly registrations,

00:41:09.510 --> 00:41:10.895
and more detailed information

00:41:10.895 --> 00:41:14.493
is available by reading the QR code.

00:41:15.780 --> 00:41:18.252
And we also published a picture book

00:41:18.252 --> 00:41:21.480
for friendly awareness-raising activities.

00:41:21.480 --> 00:41:25.290
This was originally contributed
by Ms. Lisa Sanders,

00:41:25.290 --> 00:41:26.123
of course.

00:41:28.110 --> 00:41:29.113
And the study group also

00:41:29.113 --> 00:41:31.680
started awareness-raising activities.

00:41:31.680 --> 00:41:36.360
Critical management manual were
prepared for obstetricians,

00:41:36.360 --> 00:41:38.220
and the educational poster and brochure

00:41:38.220 --> 00:41:39.933
were made for pregnant women.

00:41:41.073 --> 00:41:46.073
This brochure has, oh, okay,
detailed the seven preventive

00:41:47.430 --> 00:41:50.943
measures that is specific
and easy to understand.

00:41:52.170 --> 00:41:54.480
And finally we have just
published a guideline

00:41:54.480 --> 00:41:56.880
for clinical management of congenital CMV.

00:41:56.880 --> 00:41:59.460
Based on the algorithm
of clinical management,

00:41:59.460 --> 00:42:01.620
we picked up 20 clinical questions

00:42:01.620 --> 00:42:04.473
and described the answers
with evidence levels.

00:42:06.090 --> 00:42:09.213
And they were reviewed by
several academic societies.

00:42:10.860 --> 00:42:14.190
And these are the cover
and the table of content.

00:42:14.190 --> 00:42:16.680
And one chapter is for
patient family association

00:42:16.680 --> 00:42:20.373
and the support written
by our representative.

00:42:21.540 --> 00:42:22.713
And this is the text.

00:42:24.327 --> 00:42:28.623
The study group deeply
acknowledged our association

00:42:28.623 --> 00:42:31.077
in the preface of the guideline.

00:42:33.115 --> 00:42:34.050
I'm sorry.

00:42:34.050 --> 00:42:35.310
Okay, thank you.

00:42:35.310 --> 00:42:36.150
Thank you for your attention,

00:42:36.150 --> 00:42:38.149
and please visit my poster tomorrow.

00:42:38.149 --> 00:42:41.149
(audience applauds)

00:42:45.086 --> 00:42:47.030
- [Colin] If I use this, would this work?

00:42:49.380 --> 00:42:51.060
Perfect, I'm gonna push
this, can you all hear me?

00:42:51.060 --> 00:42:52.710
Perfect, I first wanna recognize.

00:43:00.360 --> 00:43:02.010
Well, either way, all these
presenters are basically--

00:43:02.010 --> 00:43:04.230
- [Speaker] I suggest we should let go.

00:43:13.671 --> 00:43:16.115
- [Colin] All these presenters
are doing this basically

00:43:16.115 --> 00:43:18.780
from memory 'cause this screen
is kind of flapping around.

00:43:18.780 --> 00:43:21.029
So very cool.

00:43:21.029 --> 00:43:23.713
(laughs) Ah, perfect.

00:43:23.713 --> 00:43:24.930
- Thank you.
- Thank you.

00:43:24.930 --> 00:43:26.340
I just wanted to
recognize these presenters

00:43:26.340 --> 00:43:27.720
for their excellent jobs today.

00:43:27.720 --> 00:43:30.300
All of these presentations
are basically from memory.

00:43:30.300 --> 00:43:31.590
I don't have that great of a mind.

00:43:31.590 --> 00:43:33.030
I need to read some numbers up on mine,

00:43:33.030 --> 00:43:34.230
so I'm gonna stand over here.

00:43:34.230 --> 00:43:36.090
Plus, you don't need to
see me in the front of you.

00:43:36.090 --> 00:43:38.070
I also recognize I'm
the last person standing

00:43:38.070 --> 00:43:40.890
between you and a raffle,
so I'll try and be quick.

00:43:40.890 --> 00:43:43.800
I'm here on behalf of co-authors,

00:43:43.800 --> 00:43:45.420
one of whom is in the
room, John Diaz-Decaro.

00:43:45.420 --> 00:43:47.340
So if you see him, go
ahead and ask him questions

00:43:47.340 --> 00:43:48.510
about this study as well.

00:43:48.510 --> 00:43:49.567
But I'm here to present a study on the

00:43:49.567 --> 00:43:52.110
"Modeled Seroprevalence
of CMV in North America

00:43:52.110 --> 00:43:52.943
by Age and Sex."

00:43:52.943 --> 00:43:55.673
That's for North, that's for
the United States and Canada.

00:43:58.050 --> 00:44:00.030
I guess I have to come a little closer.

00:44:00.030 --> 00:44:03.390
There we go, these are our
disclosures and acknowledgements.

00:44:03.390 --> 00:44:04.920
I'm not gonna spend
much time on this slide

00:44:04.920 --> 00:44:07.140
as I think everyone in the
room here is very familiar

00:44:07.140 --> 00:44:08.250
with cCMV.

00:44:08.250 --> 00:44:11.010
However, again, CMV is a
common lifelong latent virus.

00:44:11.010 --> 00:44:15.000
It's transmitted during
pregnancy from mother to fetus.

00:44:15.000 --> 00:44:16.950
For all the Minnesota
epidemiologists in the house,

00:44:16.950 --> 00:44:19.560
I'm going to cite the one in 200 babies

00:44:19.560 --> 00:44:21.000
are born in the United States and Canada.

00:44:21.000 --> 00:44:24.270
Although your exciting data
are actually kind of maybe

00:44:24.270 --> 00:44:26.220
leading to question that now.

00:44:26.220 --> 00:44:28.260
Signs and symptoms are
present at birth, however,

00:44:28.260 --> 00:44:31.290
they might not also appear
until a couple years later

00:44:31.290 --> 00:44:32.460
or several years later.

00:44:32.460 --> 00:44:34.860
And they are multi-system in nature.

00:44:34.860 --> 00:44:37.710
And then we also know that
there are higher rates of cCMV

00:44:37.710 --> 00:44:41.160
that are associated with
higher maternal seroprevalence.

00:44:41.160 --> 00:44:43.650
As additional context
to then this analysis,

00:44:43.650 --> 00:44:46.020
we know the global CMV
seroprevalence ranges

00:44:46.020 --> 00:44:48.300
from 45% to 100%.

00:44:48.300 --> 00:44:49.620
It's a rather broad range.

00:44:49.620 --> 00:44:51.060
However, when the question comes

00:44:51.060 --> 00:44:51.990
what's the CMV seroprevalence

00:44:51.990 --> 00:44:54.570
for a specific geographic setting,

00:44:54.570 --> 00:44:57.690
we often turn to then
population-level data.

00:44:57.690 --> 00:45:00.900
Those data need to be contemporary
as well as comprehensive.

00:45:00.900 --> 00:45:03.180
And however, that's also problematic

00:45:03.180 --> 00:45:05.330
for many geographic settings
in the United States.

00:45:05.330 --> 00:45:07.170
In this analysis, for example,

00:45:07.170 --> 00:45:10.050
data were reported relatively
recently for children.

00:45:10.050 --> 00:45:13.440
However, in adults the most
recent sampling was in 2004.

00:45:13.440 --> 00:45:17.370
In Canada, the sampling
is even more distant,

00:45:17.370 --> 00:45:19.080
and it's also sparser as well.

00:45:19.080 --> 00:45:21.510
So we conducted a systematic
literature review,

00:45:21.510 --> 00:45:24.030
and we developed a mathematical
model to extract data

00:45:24.030 --> 00:45:28.200
and estimate CMV seroprevalence
for a broad age category.

00:45:28.200 --> 00:45:30.000
The spectrum of age from one to 89 years

00:45:30.000 --> 00:45:31.380
in the United States, for example.

00:45:31.380 --> 00:45:32.823
By two years age groups.

00:45:34.620 --> 00:45:36.133
We conducted our lit search in PubMed

00:45:36.133 --> 00:45:38.160
and Embase electronic databases.

00:45:38.160 --> 00:45:40.080
We restricted our data to publications

00:45:40.080 --> 00:45:42.270
that were published in 2005 to 2022

00:45:42.270 --> 00:45:43.560
when the search was conducted.

00:45:43.560 --> 00:45:45.060
We restricted to the English language.

00:45:45.060 --> 00:45:47.580
In the United States, we
identified seven studies

00:45:47.580 --> 00:45:50.116
all of whom examined data from NHANES,

00:45:50.116 --> 00:45:52.408
which is a representative
population sample

00:45:52.408 --> 00:45:55.695
of males and females,
ages one to 89 years.

00:45:55.695 --> 00:45:59.070
As I said, the last year of
sampling for adults was in 2004

00:45:59.070 --> 00:46:03.120
in this dataset in these
publications in 2024 children.

00:46:03.120 --> 00:46:05.340
In Canada, we identified
three publications.

00:46:05.340 --> 00:46:07.350
However, they were all
based in academic hospitals

00:46:07.350 --> 00:46:10.860
among pregnant women, ages 17 to 47 years.

00:46:10.860 --> 00:46:13.503
And the most recent
sampling year was in 2013.

00:46:15.780 --> 00:46:18.450
Another slide about
our methods real quick.

00:46:18.450 --> 00:46:20.880
We used a random effects meta
regression model to account

00:46:20.880 --> 00:46:22.440
for the between study heterogeneity

00:46:22.440 --> 00:46:24.630
that we identified in our search results.

00:46:24.630 --> 00:46:27.390
I'm gonna talk about Canada a
little bit more specifically.

00:46:27.390 --> 00:46:29.430
Given the sparseness of the
data in the three studies

00:46:29.430 --> 00:46:31.470
only in pregnant women,
we had to do two levels

00:46:31.470 --> 00:46:33.870
of extrapolation to go from pregnant women

00:46:33.870 --> 00:46:36.060
to then the general population of females.

00:46:36.060 --> 00:46:38.100
So we used data from the UK, France,

00:46:38.100 --> 00:46:40.800
and Japan to make that estimation.

00:46:40.800 --> 00:46:42.450
And then we also then had to extrapolate

00:46:42.450 --> 00:46:44.430
from the general population of females

00:46:44.430 --> 00:46:46.415
to then the general population
of males to then get

00:46:46.415 --> 00:46:48.360
that estimate that we were after.

00:46:48.360 --> 00:46:50.070
And that was used on NHANES data

00:46:50.070 --> 00:46:52.500
for the sex-specific
differences that we observed,

00:46:52.500 --> 00:46:55.230
which was approximately 10%.

00:46:55.230 --> 00:46:56.670
We then modeled our seroprevalence

00:46:56.670 --> 00:46:57.960
for two years age intervals.

00:46:57.960 --> 00:47:00.390
And I will get to those right now.

00:47:00.390 --> 00:47:03.090
So here in this slide and
in the following slides,

00:47:03.090 --> 00:47:05.610
females are represented
in red, males in blue.

00:47:05.610 --> 00:47:07.170
Observed data from publications

00:47:07.170 --> 00:47:09.184
are in the lighter circled dots.

00:47:09.184 --> 00:47:12.948
The more intense darker dockets
are the model estimates.

00:47:12.948 --> 00:47:16.140
As we can see on both the
female and male charts there,

00:47:16.140 --> 00:47:18.600
we see that the overlap
between the observed

00:47:18.600 --> 00:47:20.760
and the fitted data are
actually quite tight.

00:47:20.760 --> 00:47:23.100
The confidence intervals in the gray

00:47:23.100 --> 00:47:25.500
are actually quite narrow,
indicating relatively good

00:47:25.500 --> 00:47:27.813
agreement and fit for
our data and our model.

00:47:29.551 --> 00:47:30.873
Oh, too far?

00:47:31.860 --> 00:47:33.030
Still too far.

00:47:33.030 --> 00:47:34.200
One more time, there we go.

00:47:34.200 --> 00:47:36.150
I'm so sorry, it's the end of the day.

00:47:36.150 --> 00:47:38.340
This is our slide then demonstrating

00:47:38.340 --> 00:47:39.990
that the estimated CMV seroprevalence

00:47:39.990 --> 00:47:42.000
for males and females
in the United States.

00:47:42.000 --> 00:47:43.920
We see a few trends here
pulling out of the data.

00:47:43.920 --> 00:47:46.860
One we see rather expectedly an increase

00:47:46.860 --> 00:47:48.816
in seroprevalence with increasing age.

00:47:48.816 --> 00:47:51.210
We also then see a gender disparity where

00:47:51.210 --> 00:47:52.898
at every age the prevalence of CMV

00:47:52.898 --> 00:47:54.990
is greater in females than in males.

00:47:54.990 --> 00:47:57.390
And then we also see a slight
increase in this disparity

00:47:57.390 --> 00:47:59.520
then as age increases.

00:47:59.520 --> 00:48:01.590
We look at then on the
table on the right here.

00:48:01.590 --> 00:48:03.620
When we're looking at
then the seroprevalence

00:48:03.620 --> 00:48:05.520
as women enter their reproductive years,

00:48:05.520 --> 00:48:08.130
we see that by 20 to 22 years of age

00:48:08.130 --> 00:48:11.490
women already have a CMV
seroprevalence of 50.3%.

00:48:11.490 --> 00:48:14.700
Males then at 42.8%.

00:48:14.700 --> 00:48:16.380
Moving to Canada, a similar graph,

00:48:16.380 --> 00:48:17.370
however, there's less data.

00:48:17.370 --> 00:48:19.230
You'll also notice the
age range at the bottom

00:48:19.230 --> 00:48:21.240
on the X-axis is also quite short.

00:48:21.240 --> 00:48:24.720
Again, it was in pregnant
women 17 to 47 years of age.

00:48:24.720 --> 00:48:25.788
However, we fit our model.

00:48:25.788 --> 00:48:29.490
The fit and the overlap
is a little less tight.

00:48:29.490 --> 00:48:31.680
There is a little more
wobble in these data points.

00:48:31.680 --> 00:48:34.320
The confidence interval
is actually quite wide.

00:48:34.320 --> 00:48:38.680
So this represents a difficulty
in modeling these data

00:48:39.900 --> 00:48:41.490
with a sparseness of the evidence

00:48:41.490 --> 00:48:42.940
that we are able to identify.

00:48:43.800 --> 00:48:45.150
However, looking at the trend, again,

00:48:45.150 --> 00:48:46.590
we do see that same trend,

00:48:46.590 --> 00:48:49.027
increasing CMV seroprevalence
with increasing age.

00:48:49.027 --> 00:48:51.210
We see that a gender disparity as well.

00:48:51.210 --> 00:48:52.470
But that's by manufacturer.

00:48:52.470 --> 00:48:53.970
That's an artifact of our methods.

00:48:53.970 --> 00:48:57.450
Again, that was an extrapolation
from the sex difference

00:48:57.450 --> 00:48:59.190
between female general population

00:48:59.190 --> 00:49:01.380
to male general population, and its 10%.

00:49:01.380 --> 00:49:03.480
However, when we're looking
at the burden in females then

00:49:03.480 --> 00:49:05.756
as they're entering their
reproductive ages 18 to 20 years,

00:49:05.756 --> 00:49:09.923
the prevalence of CMV is already 23.7%.

00:49:09.923 --> 00:49:11.640
This is my last slide, I promise,

00:49:11.640 --> 00:49:13.553
and I think I can get
through it pretty quick.

00:49:13.553 --> 00:49:15.990
First, we had three kind of important

00:49:15.990 --> 00:49:17.880
contributions from this study.

00:49:17.880 --> 00:49:20.250
The first being that
we updated the estimate

00:49:20.250 --> 00:49:23.038
of CMV seroprevalence for
the United States for adults.

00:49:23.038 --> 00:49:26.400
That hadn't been updated
since 2004, for example.

00:49:26.400 --> 00:49:28.260
In Canada, this is a first effort.

00:49:28.260 --> 00:49:30.724
However, you know,
limited the methods may be

00:49:30.724 --> 00:49:32.730
for estimating CMV seroprevalence

00:49:32.730 --> 00:49:35.490
in the female and male
general population as well.

00:49:35.490 --> 00:49:37.050
We identified clear differences

00:49:37.050 --> 00:49:39.030
between the Canadian and
the United States data,

00:49:39.030 --> 00:49:40.530
both in terms of the number of studies

00:49:40.530 --> 00:49:42.360
as well as then trends.

00:49:42.360 --> 00:49:44.604
However, we did identify
substantial seroprevalence burden

00:49:44.604 --> 00:49:47.760
in females in particular
in both the United States

00:49:47.760 --> 00:49:49.139
and the Canadian setting.

00:49:49.139 --> 00:49:52.410
So much though that by
reproductive age half

00:49:52.410 --> 00:49:54.099
of the female population
in the United States

00:49:54.099 --> 00:49:57.630
and three-quarters of the
female population in Canada

00:49:57.630 --> 00:49:58.980
are immunologically naive

00:49:58.980 --> 00:50:00.570
as they enter the reproductive years,

00:50:00.570 --> 00:50:02.700
therefore at risk of
primary seroconversion

00:50:02.700 --> 00:50:04.260
during pregnancy.

00:50:04.260 --> 00:50:08.130
Again, I think this study also
really underscores the need

00:50:08.130 --> 00:50:11.010
for robust national epidemiologic data,

00:50:11.010 --> 00:50:12.510
and that'll better
inform our understanding

00:50:12.510 --> 00:50:14.190
of CMV seroprevalence.

00:50:14.190 --> 00:50:16.110
With that, I thank you very
much for your attention,

00:50:16.110 --> 00:50:17.951
and I look forward to any questions.

00:50:17.951 --> 00:50:20.951
(audience applauds)

00:50:24.389 --> 00:50:26.890
- [Moderator] Okay, it's
easier if you come down here

00:50:26.890 --> 00:50:29.280
for questions, but if you need me to,

00:50:29.280 --> 00:50:31.410
I will run the mic to you.

00:50:31.410 --> 00:50:33.570
Any questions so far?

00:50:33.570 --> 00:50:34.403
All right.

00:50:39.090 --> 00:50:42.090
- [Audience Member] Thanks, I
really enjoyed all the talks.

00:50:42.090 --> 00:50:44.904
First, I just, while I remember, Colin,

00:50:44.904 --> 00:50:49.904
we have population-based
data in Canada, in infants,

00:50:50.844 --> 00:50:55.844
so I can send you 13% at three
months and 20% at one year.

00:50:56.850 --> 00:50:58.290
Yeah.

00:50:58.290 --> 00:51:02.130
Scott, a very nice presentation.

00:51:02.130 --> 00:51:07.130
My question is, do any of the
studies that you found account

00:51:09.000 --> 00:51:11.700
for a termination of pregnancies

00:51:11.700 --> 00:51:16.700
because of severe ultrasound anomalies?

00:51:18.150 --> 00:51:19.590
Do we know how often that happens

00:51:19.590 --> 00:51:21.140
or how do you account for that?

00:51:22.134 --> 00:51:24.390
- A number of the European studies

00:51:24.390 --> 00:51:28.424
do report the termination of pregnancy

00:51:28.424 --> 00:51:33.093
due to positive CMV and abnormalities.

00:51:34.471 --> 00:51:37.260
We don't have many infant
mortality estimates

00:51:37.260 --> 00:51:39.123
from those European studies.

00:51:40.560 --> 00:51:44.040
There is, that is one of the limitations.

00:51:44.040 --> 00:51:48.210
I don't think there are many terminations

00:51:48.210 --> 00:51:52.890
in this country due to
CMV-caused abnormalities.

00:51:52.890 --> 00:51:56.223
But if anyone has information
on that, I would love to know.

00:52:01.530 --> 00:52:02.880
- [Audience Member] Hi,
thank you all for your talks.

00:52:02.880 --> 00:52:04.520
My question is for Dr. Page.

00:52:04.520 --> 00:52:06.870
First, congratulations
on all of your successes.

00:52:06.870 --> 00:52:09.090
It sounds like it's gonna
be a really exciting

00:52:09.090 --> 00:52:10.560
program for you guys.

00:52:10.560 --> 00:52:11.790
My question is two parts.

00:52:11.790 --> 00:52:14.880
Recognizing that Arizona has a much larger

00:52:14.880 --> 00:52:17.610
Indigenous population than
some of the other states,

00:52:17.610 --> 00:52:20.790
one, will you or did you collect

00:52:20.790 --> 00:52:23.010
specific tribal affiliation data?

00:52:23.010 --> 00:52:26.010
And then also recognizing
that many Indigenous persons

00:52:26.010 --> 00:52:28.752
who live on tribal lands often
have to be med-evaced out

00:52:28.752 --> 00:52:31.470
for higher levels of
care, such as the NICU,

00:52:31.470 --> 00:52:33.810
will you collect residency data

00:52:33.810 --> 00:52:36.450
to better inform those
potential disparities?

00:52:36.450 --> 00:52:37.680
- Oh, these are great questions.

00:52:37.680 --> 00:52:40.260
So the, yes, I mean, partly we think

00:52:40.260 --> 00:52:43.170
that we have a really unique
population in Arizona,

00:52:43.170 --> 00:52:47.370
and so there's a great deal
of value in obtaining the kind

00:52:47.370 --> 00:52:49.800
of data that we're looking
for because we think we can't

00:52:49.800 --> 00:52:51.480
just extrapolate from other states

00:52:51.480 --> 00:52:54.330
and feel like we're
getting the right answer.

00:52:54.330 --> 00:52:56.697
We did not gather tribal affiliation.

00:52:56.697 --> 00:53:01.110
So what we hope that we
could do is take race data

00:53:01.110 --> 00:53:03.810
and geographic data and be
able to put those together.

00:53:03.810 --> 00:53:05.003
But one of the questions
that came up as part

00:53:05.003 --> 00:53:08.310
of the project is about
birthing center, for example.

00:53:08.310 --> 00:53:12.417
And so if you're, we have
to collect the home zip code

00:53:12.417 --> 00:53:14.100
as well as the birthing zip code.

00:53:14.100 --> 00:53:16.080
If we only use birthing zip code,

00:53:16.080 --> 00:53:18.210
then all of these patients
were born in Downtown Phoenix

00:53:18.210 --> 00:53:20.430
and it doesn't tell us much
about where they come from.

00:53:20.430 --> 00:53:23.130
So we're hoping to use
their home information

00:53:23.130 --> 00:53:24.600
to give us geographic data.

00:53:24.600 --> 00:53:25.704
Again, if you saw these numbers,

00:53:25.704 --> 00:53:28.410
we had a surprisingly small
number of Native Americans

00:53:28.410 --> 00:53:30.810
on this study, given our
population in the state.

00:53:30.810 --> 00:53:32.010
And again that, we have,

00:53:32.010 --> 00:53:33.900
this is a very limited
sample from what we had.

00:53:33.900 --> 00:53:36.330
We know that once we see that
we'll have a much wider number

00:53:36.330 --> 00:53:38.100
and a broader area.

00:53:38.100 --> 00:53:38.977
That answer your question?
- Yes, thank you.

00:53:38.977 --> 00:53:40.627
- Thank you for bringing that up.

00:53:43.747 --> 00:53:46.249
- [Audience Member] For Dr. Moriuchi.

00:53:46.249 --> 00:53:48.690
Thank you for coming to the meeting.

00:53:48.690 --> 00:53:51.930
We're honored that you came
here all this distance.

00:53:51.930 --> 00:53:55.500
I wanted to ask you, I mean,
and it's tremendous work

00:53:55.500 --> 00:53:57.531
that you've done with this organization.

00:53:57.531 --> 00:54:00.420
I wanted to ask you
about the seroprevalence

00:54:00.420 --> 00:54:03.960
of CMV antibodies in
women of reproductive age.

00:54:03.960 --> 00:54:07.470
I may have missed it, but is it your sense

00:54:07.470 --> 00:54:09.480
that most congenital CMV infections

00:54:09.480 --> 00:54:13.530
are in women with preconception
immunity in Japan?

00:54:13.530 --> 00:54:15.989
Or do you have any data on that?

00:54:15.989 --> 00:54:19.773
Are they primary infections
or reactivation reinfections?

00:54:20.910 --> 00:54:22.857
- So first of all, the
seroprevalence among,

00:54:22.857 --> 00:54:25.770
CMV seroprevalence among pregnant women

00:54:25.770 --> 00:54:28.890
is currently 60 to 70%.

00:54:28.890 --> 00:54:30.870
But several decades ago,

00:54:30.870 --> 00:54:34.200
the seroprevalence was more than 90%.

00:54:34.200 --> 00:54:36.540
So it has been decreasing.

00:54:36.540 --> 00:54:40.387
And you know,

00:54:40.387 --> 00:54:45.260
the incidence of congenital
CMV in Japan is 0.31%.

00:54:45.260 --> 00:54:49.101
So not very high, but we
are not sure, you know,

00:54:49.101 --> 00:54:53.550
if it's going up or down, or steady.

00:54:53.550 --> 00:54:55.080
- [Audience Member] And do
you know if the infections

00:54:55.080 --> 00:54:57.470
are in seropositive
women, seronegative women.

00:54:57.470 --> 00:54:58.570
Do you have some data?
- Yeah.

00:54:58.570 --> 00:55:00.960
- Probably half and half.
- Okay.

00:55:00.960 --> 00:55:02.347
- Yeah.
- Thank you.

00:55:03.330 --> 00:55:06.330
- [Audience Member] Another
question for my Japanese friend.

00:55:07.230 --> 00:55:09.570
What's this, what's the lay of the land

00:55:09.570 --> 00:55:11.909
with respect to parent
advocacy groups in Japan?

00:55:11.909 --> 00:55:13.851
I don't know what's happening there.

00:55:13.851 --> 00:55:15.831
Are you working with?

00:55:15.831 --> 00:55:19.380
Like what, yeah, what's the
lay of the land, and who's,

00:55:19.380 --> 00:55:21.960
are you having success with the parents?

00:55:21.960 --> 00:55:24.330
- Excuse me, could you
please repeat again?

00:55:24.330 --> 00:55:26.383
- [Audience Member] Parent
advocacy groups, so.

00:55:26.383 --> 00:55:27.720
- Yes.

00:55:27.720 --> 00:55:28.620
- [Audience Member] Are
you working with any

00:55:28.620 --> 00:55:29.580
parent advocacy groups?

00:55:29.580 --> 00:55:31.200
Are they lobbying for change?

00:55:31.200 --> 00:55:33.450
Are there, is anyone working kind of doing

00:55:33.450 --> 00:55:35.154
what I'm doing out there?

00:55:35.154 --> 00:55:37.830
- Well, our association,
the TORCH Association,

00:55:37.830 --> 00:55:41.130
has been working together
with that study group,

00:55:41.130 --> 00:55:46.130
but we are not doing very
political activities,

00:55:47.340 --> 00:55:51.060
but we have some negotiation
with the statement

00:55:51.060 --> 00:55:56.060
and also some, the local
government, the officers.

00:55:57.330 --> 00:56:00.720
And so our major activities,

00:56:00.720 --> 00:56:03.810
awareness-raising
activities and peer support.

00:56:03.810 --> 00:56:08.810
However, we would like to, you know,

00:56:08.940 --> 00:56:11.160
appeal to the local government

00:56:11.160 --> 00:56:13.083
and also the Ministry of Health.

00:56:16.530 --> 00:56:18.018
- [Audience Member] Hi, I
have, I also have a question

00:56:18.018 --> 00:56:19.113
for you, sir.

00:56:20.452 --> 00:56:23.730
I noticed when you, you were talking

00:56:23.730 --> 00:56:28.290
about the umbilical cord,
and so the women in Japan,

00:56:28.290 --> 00:56:32.520
they bring that home to
their family after the birth,

00:56:32.520 --> 00:56:33.780
is that correct?

00:56:33.780 --> 00:56:34.860
- Excuse me.

00:56:34.860 --> 00:56:37.770
- [Audience Member] The women
bring their umbilical cord

00:56:37.770 --> 00:56:42.770
home after the birth,
is that correct, what?

00:56:43.380 --> 00:56:48.270
- Yes, we keep the
umbilical cord as a symbol

00:56:48.270 --> 00:56:52.230
of mother to child bonding,
so it is always available.

00:56:52.230 --> 00:56:57.230
So, and we have two advantage
for dried umbilical code.

00:56:57.900 --> 00:57:02.160
So, first of all, the
detection rate is higher

00:57:02.160 --> 00:57:06.240
when we use the umbilical
cord than the Guthrie card.

00:57:06.240 --> 00:57:10.740
And the second advantage
is the, as I said,

00:57:10.740 --> 00:57:13.351
it is always available in Japan.

00:57:13.351 --> 00:57:16.110
- [Audience Member] And
then how long of course

00:57:16.110 --> 00:57:17.973
could that be good for?

00:57:19.980 --> 00:57:23.850
- Well, a year ago I have detected,

00:57:23.850 --> 00:57:28.850
I could detect CMV DNA
from the 23-year-old girl.

00:57:29.460 --> 00:57:30.660
I mean, the women.

00:57:30.660 --> 00:57:34.866
So we can detect the CMV
DNA even after decades.

00:57:34.866 --> 00:57:37.080
- [Audience Member] That's cool.

00:57:37.080 --> 00:57:38.293
- [Audience Member] That's unreal.

00:57:38.293 --> 00:57:42.660
(audience members chattering)

00:57:42.660 --> 00:57:44.010
- [Audience Member]
One question in regards

00:57:44.010 --> 00:57:47.133
to the National CMV month.

00:57:48.480 --> 00:57:51.870
I thought your work was very interesting.

00:57:51.870 --> 00:57:55.720
Do you think that it would
be better to rename it

00:57:56.790 --> 00:58:00.660
with an extra small C in front of CMV

00:58:00.660 --> 00:58:05.660
or is my interpretation
that the advocacy month

00:58:07.530 --> 00:58:10.323
is not for congenital CMV?

00:58:11.310 --> 00:58:13.460
- That's a great question
and I, oh, sorry.

00:58:15.835 --> 00:58:17.550
Got it, I think.

00:58:17.550 --> 00:58:18.383
It's a great question.

00:58:18.383 --> 00:58:20.970
I had this, I mean I'm, as I
said, I'm new to the area so,

00:58:20.970 --> 00:58:22.020
or to this field.

00:58:22.020 --> 00:58:24.000
So I have, would really defer to people

00:58:24.000 --> 00:58:25.080
who know much more than me.

00:58:25.080 --> 00:58:29.280
But I was quite confused,
like because the mandate

00:58:29.280 --> 00:58:32.880
from the Senate explicitly is
talking about congenital CMV.

00:58:32.880 --> 00:58:35.970
The CDC is explicitly
talking about congenital CMV.

00:58:35.970 --> 00:58:37.080
And then when I'm reading tweets,

00:58:37.080 --> 00:58:38.820
which is how I learned all of you,

00:58:38.820 --> 00:58:42.780
which was pretty cool, I was just lost as

00:58:42.780 --> 00:58:45.120
to why we're not talking
about congenital CMV.

00:58:45.120 --> 00:58:47.565
So if that's the goal, I'm with you.

00:58:47.565 --> 00:58:50.370
We should be talking about congenital CMV.

00:58:50.370 --> 00:58:51.570
Thank you.
- Thank you.

00:58:55.740 --> 00:58:57.973
(audience members chattering)

00:58:57.973 --> 00:58:59.250
- [Audience Member] I
have another question.

00:58:59.250 --> 00:59:04.250
Sunil, do you think, or do you know

00:59:04.410 --> 00:59:06.180
what those false positives were from?

00:59:06.180 --> 00:59:11.180
Is it something specific
to the Alethea assay or?

00:59:11.460 --> 00:59:15.748
- So, I don't know, that's the
only assay that we have used.

00:59:15.748 --> 00:59:20.070
There seems to be two possibilities.

00:59:20.070 --> 00:59:23.310
Surface contamination during the few weeks

00:59:23.310 --> 00:59:26.280
that it occurred in March,
which has cleaned up.

00:59:26.280 --> 00:59:30.480
But we do continue to
see some indeterminants,

00:59:30.480 --> 00:59:32.460
even a false positive even after that.

00:59:32.460 --> 00:59:35.280
And the other, from my
molecular lab director,

00:59:35.280 --> 00:59:37.950
is the setting, and
this is like completely

00:59:37.950 --> 00:59:40.920
out of my league, the setting
of the software setting

00:59:40.920 --> 00:59:42.300
to make it more sensitive.

00:59:42.300 --> 00:59:45.540
So the software settings is all I can say

00:59:45.540 --> 00:59:46.710
is what he told me.

00:59:46.710 --> 00:59:49.050
So I don't know the
technical details of that.

00:59:49.050 --> 00:59:50.970
And those need to be tweaked.

00:59:50.970 --> 00:59:52.650
- [Audience Member] Because
I think there was a paper

00:59:52.650 --> 00:59:55.980
just published showing
like unexpected levels

00:59:55.980 --> 00:59:57.990
of false positives with that assay.

00:59:57.990 --> 00:59:58.823
- Oh, okay.

00:59:58.823 --> 00:59:59.763
So thank you.

01:00:03.330 --> 01:00:05.070
- [Audience Member] This
is more of a shout out

01:00:05.070 --> 01:00:09.843
not a question for the Arizona gentleman.

01:00:10.920 --> 01:00:14.520
No, so when I saw you're
from Phoenix Children's,

01:00:14.520 --> 01:00:17.061
my best friend from college
actually works at the lab,

01:00:17.061 --> 01:00:19.200
and I asked him like, "Well,
are you testing for CMV?"

01:00:19.200 --> 01:00:20.790
She said, "Yes."

01:00:20.790 --> 01:00:23.430
They have plenty of cases
and she works third shift.

01:00:23.430 --> 01:00:24.330
But I thought that was pretty cool

01:00:24.330 --> 01:00:25.770
that the connection was there,

01:00:25.770 --> 01:00:28.980
and she's doing the work
for you and all that.

01:00:28.980 --> 01:00:29.940
So I thought that was pretty cool.

01:00:29.940 --> 01:00:30.773
That's all.

01:00:30.773 --> 01:00:32.100
- We better talk about her so we find out

01:00:32.100 --> 01:00:33.502
where she's running those.

01:00:33.502 --> 01:00:37.110
- [Audience Member] Oh, I would
love to have a conversation.

01:00:37.110 --> 01:00:38.874
We could even FaceTime.

01:00:38.874 --> 01:00:41.050
(audience members laugh)

01:00:41.050 --> 01:00:44.190
- [Moderator] Okay, so remember
that all of these presenters

01:00:44.190 --> 01:00:48.630
will be giving poster presentations
during lunch tomorrow.

01:00:48.630 --> 01:00:50.460
So, you have one more question?

01:00:50.460 --> 01:00:52.230
- One more question.
- One more question, okay.

01:00:52.230 --> 01:00:54.241
I actually have a question too, darn it.

01:00:54.241 --> 01:00:55.200
(audience members laughing)

01:00:55.200 --> 01:00:56.033
- [Audience Member] Hi, and thank you all

01:00:56.033 --> 01:00:56.880
for your presentations.

01:00:56.880 --> 01:00:58.650
Really, really excellent.

01:00:58.650 --> 01:01:01.290
Tracy, I have a question for you actually.

01:01:01.290 --> 01:01:03.240
So in terms of the social media tracking,

01:01:03.240 --> 01:01:05.580
have you considered LinkedIn,

01:01:05.580 --> 01:01:08.700
not just because of the
connection with the providers,

01:01:08.700 --> 01:01:11.434
but also for tracking
the sustained awareness

01:01:11.434 --> 01:01:13.710
that happens amongst that community?

01:01:13.710 --> 01:01:14.543
- I think you're absolutely right.

01:01:14.543 --> 01:01:16.050
I mean, I think that's
where we're gonna find

01:01:16.050 --> 01:01:17.670
more providers who are talking about it.

01:01:17.670 --> 01:01:19.620
I'm just at capacity 'cause it's me,

01:01:19.620 --> 01:01:22.770
but if anybody wants to
help, I would love help.

01:01:22.770 --> 01:01:25.200
And then we have another CMV
awareness month coming up.

01:01:25.200 --> 01:01:27.193
So that would be fabulous, I agree.

01:01:27.193 --> 01:01:28.950
That is where providers are.

01:01:28.950 --> 01:01:30.250
- Thank you.
- Thank you.

01:01:31.787 --> 01:01:35.850
- [Audience Member] Okay,
so my question is for Scott.

01:01:35.850 --> 01:01:39.557
Have you thought about
looking at the Fetal

01:01:39.557 --> 01:01:42.420
and Infant Mortality Review?

01:01:42.420 --> 01:01:46.464
Is there any information
around CMV in that review?

01:01:46.464 --> 01:01:47.733
- I have not.

01:01:51.000 --> 01:01:51.833
Yeah.

01:01:52.710 --> 01:01:55.020
The problem with the death records,

01:01:55.020 --> 01:01:57.990
CMV is not very often recorded,

01:01:57.990 --> 01:01:59.940
for the reasons I already mentioned.

01:01:59.940 --> 01:02:00.773
- [Audience Member] Mm-hm, okay.

01:02:00.773 --> 01:02:03.540
- And in terms of fetal mortality,

01:02:03.540 --> 01:02:05.220
there have been a number
of published studies.

01:02:05.220 --> 01:02:08.490
Dr. Rawlinson published
some of the earliest ones,

01:02:08.490 --> 01:02:11.550
which have documented,
when you do the pathology,

01:02:11.550 --> 01:02:16.550
you'll find CMV infections
very common in fetal deaths,

01:02:18.360 --> 01:02:21.988
but they're not routinely tested for CMV.

01:02:21.988 --> 01:02:23.160
- [Audience Member] Okay.

01:02:23.160 --> 01:02:24.540
Okay, thank you so much.

01:02:24.540 --> 01:02:26.730
And Colin, I have one
little question for you.

01:02:26.730 --> 01:02:28.200
I'm hoping it's little.

01:02:28.200 --> 01:02:31.530
So just what is your hypothesis

01:02:31.530 --> 01:02:35.677
around the gender differences
of seroprevalence?

01:02:35.677 --> 01:02:37.710
- Well, so for Canada it
was manufactured, right,

01:02:37.710 --> 01:02:38.543
because there was no data.

01:02:38.543 --> 01:02:41.047
So we had to make that
extrapolation, that assumption.

01:02:41.047 --> 01:02:44.463
For the United States, I'm
not entirely sure other than,

01:02:45.360 --> 01:02:47.580
you know, potential increased contact

01:02:47.580 --> 01:02:50.569
between mothers and
potentially with children.

01:02:50.569 --> 01:02:55.569
I think that might be maybe
one of the most logical tests.

01:02:55.590 --> 01:02:57.450
We can't test it in
our data unfortunately,

01:02:57.450 --> 01:02:59.043
but other studies will.

01:03:00.760 --> 01:03:02.890
- Okay, let's give them
a round of applause.

01:03:02.890 --> 01:03:06.057
(audience applauding)

