Player is loading...

Embed

Embed code is not allowed

This talk is part of a  Private webcast, embeding is not permited.

Transcriptions

Note: this content has been automatically generated.
00:00:00
oh that is work yep so i mean i'm thank you very much for inviting i really appreciated i'm not i'm gonna
00:00:07
switch gears a little bit and talk about multiple sclerosis something
00:00:12
that was uh uh mentioned in passing earlier this morning
00:00:17
so um it's important to bring this disease to the forefront about discussion because it's the
00:00:25
number one cause of neurologic disability about women of reproductive age so we're gonna
00:00:31
switch gears for menopause and and demanding alice's that are generally more
00:00:34
common out toward the end of um of live too
00:00:38
a condition that strikes people at the prime of their life um
00:00:42
multiple patients on there are in there of third and fourth decade of life when they're diagnosed
00:00:48
and what we found out also is that in the united states at least between two thousand six and two thousand fourteen
00:00:54
the rate of pregnancies among m. s. uh patients actually increased as opposed to um the rate of
00:01:00
primus pregnancies in general population that in fact went down over corresponding time period which i
00:01:06
take some personal credit for that but certainly not just me um i think people
00:01:10
feel more comfortable cancelling uh m. s. patients on terms of safety pregnancies
00:01:15
so with that in mind i've started some years ago a women's health program
00:01:20
at partners m. s. centre where have a privilege to be working
00:01:23
and uh that program centres on providing um
00:01:27
individualised reproductive cancelling to our patients
00:01:30
so it's a very complex subject like with any chronic
00:01:33
illness uh it involves discussions of parenthood decision model
00:01:37
could decision particular genetic risk uh it involves specific preconception
00:01:42
here that is um a unique for patients
00:01:45
uh it involves discussion of fertility and infertility in animist population in their their sometimes in
00:01:50
the course of their disease where we don't want them to get pregnant when there
00:01:53
taking potentially toxic medications that would not be compatible with pregnancy and then there
00:01:58
are other times where we really want to get pregnant as quickly as
00:02:01
we can when they're off their treatments and we don't have the luxury of
00:02:04
waiting six to twelve months until their conception takes place um so
00:02:10
when is it safe for the patient with them asked to consider mother could
00:02:14
get that to do there need to be a specific disease characteristics
00:02:18
um and disease control state that would make it safer for that moment to just to
00:02:23
stop for treatment which they all have to do and start trying to get pregnant
00:02:27
and also what are the psychological impact of pregnancy what is the risk of post part
00:02:31
um depression for example so we know that in multiple scores as patient population
00:02:35
the risk of major depressive disorder over the span of their lifetimes about seventy percent it's very high
00:02:41
and the risk of bipolar affective disorders at least twice as high as as in general population what we do
00:02:46
not know is whether the risk of course part of depression no patience is increased and if so
00:02:51
what can we what can be done about that um so i
00:02:56
feel strongly that we should address these types of questions
00:03:00
um through um disease based studies so there we
00:03:06
have now sixteen drugs approved for multiple sclerosis
00:03:09
and the united states and each one of these compounds run either on pregnancy registry
00:03:14
and that's great um but i feel that we need to have a comprehensive approach to this uh we need to study and and
00:03:20
prospectively stay patients with multiple sclerosis we uh the respective what treatment
00:03:24
there on if there happen to be in no treatment
00:03:27
um all the same and ideally we need to start them before they can see we need to look at the preconception time
00:03:33
conception time pregnancy duration and we need to look at the kids
00:03:37
with me to do what was done for epilepsy patients by
00:03:39
you know um page canal and and others uh where they
00:03:43
determined the risk for kids weren't the moms with seizures
00:03:48
various types of risks so we don't know that in m. s. community and we need to find that out so um
00:03:56
i will um also mention that
00:04:00
i'm slightly different um subject uh here the last point on
00:04:05
the slide is that um like with any chronic illness
00:04:10
physicians tend to focus on that almost to the exclusion of other things so
00:04:14
what we found out when we did the studies at all women
00:04:17
who have trouble emulating we have difficulty walking when you the cane or walker or wheelchair
00:04:22
to get around they don't get the screening that they should be getting so they don't get
00:04:27
their pap smears it don't get their mammograms they don't get the common ask these
00:04:30
so whatever screening that ever general population women routinely receive all patients are not getting especially if
00:04:36
they have trouble walking so that's another issue that we address in the women's health clinic
00:04:41
as well as of course things related to menopausal menopausal transition and
00:04:45
potentially hormonal i'm therapies and such so um
00:04:51
let me give you some a couple of um other ideas about the
00:04:54
current challenges that come i'm into play when we look at
00:05:00
care of younger women with a reproductive potential still comprehensive management
00:05:06
programs for pregnant m. s. patients do not exist
00:05:09
they do not exist in the united states um the uh situation might be a little bit better in europe especially in germany
00:05:15
but in most countries are just not put together and we don't have
00:05:19
clear evidence based guidelines of how to care for these patients
00:05:23
um and therefore the level of care receiver patience is widely varied
00:05:27
depending who's the provider and where such care is administered
00:05:31
but there are very few real world perspective pregnancy cohort sort of all of longitude when i feel that's a
00:05:37
giant gap in our research and in our understanding of this disease um uh in terms of research um
00:05:44
knowledge but also lack of such trials then translates into like
00:05:48
of guidelines unlike about ability to care for these patients
00:05:51
in a uh evidence based manner um
00:05:57
there's specific subgroups of all patients where we just don't know what
00:06:01
pregnancy does to them those would be patients with higher disability
00:06:04
older patience patience with unstable disease course patients with
00:06:08
very high lesion burden on the imaging studies
00:06:11
and again our understanding of what to do for these patients and how to manage them
00:06:16
successfully should come from these prospective court trials that have mentioned
00:06:21
and even though we've got much better in including patients in clinical trials in typical clinical trials
00:06:27
that lead to drug approvals why why lefty a mitre can be discussing the results um
00:06:33
oh that's neat about gender based results of the uh effects of the medications
00:06:38
those don't don't tend to get published so when we read the paper
00:06:42
describing the effects of the drug we usually get the average
00:06:46
number we don't get hardly ever in the paper in publications you know
00:06:50
ooh specific of women versus men drug effects note nor do we get reproductive age women
00:06:57
versus menopausal women i can't imagine that those effects are gonna be the same
00:07:02
so i'll leave you with this with the idea that this this is a a giant research yep
00:07:07
it's again clinical knowledge gap and we need to focus our efforts on closing that gap as best as we can

Conference Program

Opening
Gautam Maitra, Founding Member, Women's Brain Project
Dec. 12, 2017 · 8:45 a.m.
168 views
Welcome Words
Maria Teresa Ferretti, President, Women's Brain Project
Dec. 12, 2017 · 8:48 a.m.
Welcome adress
Françoise Grossetête, member of the European Parliament
Dec. 12, 2017 · 8:55 a.m.
Presentation of the day
Sylvia Day, Forum host and WBP ambassador
Dec. 12, 2017 · 9:01 a.m.
Keynote
Khaliya
Dec. 12, 2017 · 9:04 a.m.
Introduction of Elena Becker-Barroso
Elena Becker-Barroso, Editor-in-Chief of The Lancet Neurology
Dec. 12, 2017 · 9:21 a.m.
230 views
Introduction of Gillian Einstein
Gillian Einstein, University of Toronto, Canada
Dec. 12, 2017 · 9:28 a.m.
Introduction of Else Charlotte Sandset
Else Charlotte Sandset, Oslo University Hospital, Norway
Dec. 12, 2017 · 9:39 a.m.
Introduction of Carol Brayne
Carol Brayne, University of Cambridge, UK
Dec. 12, 2017 · 9:44 a.m.
Introduction of Maria Teresa Ferretti
Maria Teresa Ferretti, President, Women's Brain Project
Dec. 12, 2017 · 9:52 a.m.
157 views
Introduction of Liisa Galea
Liisa Galea, University of British Columbia, Canada
Dec. 12, 2017 · 9:56 a.m.
Introduction of Lawrence Rajendran
Lawrence Rajendran
Dec. 12, 2017 · 10:03 a.m.
242 views
Introduction of Thorsten Buch
Thorsten Buch, Director, Institute of Laboratory Animal Science (LTK), University of Zurich, Switzerland
Dec. 12, 2017 · 10:08 a.m.
Introduction of Meryl Comer
Meryl Comer , President & CEO, Geoffrey Beene Foundation Alzheimer's Initiative
Dec. 12, 2017 · 10:59 a.m.
Introduction of Mary Mittelman
Mary Mittelman, New York University School of Medicine, US
Dec. 12, 2017 · 11:05 a.m.
Introduction of Angela Abela
Angela Abela , University of Malta, Malta
Dec. 12, 2017 · 11:13 a.m.
Introduction of Tania Dussey-Cavassini
Tania Dussey-Cavassini, Former Swiss Ambassador for Global Health, Switzerland
Dec. 12, 2017 · 11:20 a.m.
477 views
Introduction of Raj Long
Raj Long , Bill and Melinda Gates Foundation, Vice-Chair, World Dementia Council
Dec. 12, 2017 · 1:30 p.m.
198 views
Introduction of Antonella Santuccione Chadha
Antonella Santuccione Chadha , Swissmedic, Swiss Regulatory Agency, Switzerland
Dec. 12, 2017 · 1:32 p.m.
370 views
Introduction of Marsha B. Henderson
Marsha B. Henderson, Food and Drugs Administration, Office for Women's Health, US
Dec. 12, 2017 · 1:36 p.m.
Introduction of Maeve Cusack
Maeve Cusack, European Institute for Women's Health
Dec. 12, 2017 · 1:43 p.m.
Introduction of Hadine Joffe
Hadine Joffe, Harvard Medical School, US
Dec. 12, 2017 · 1:47 p.m.
Introduction of Maria Houtchens
Maria Houtchens, Harvard Medical School, US
Dec. 12, 2017 · 1:55 p.m.
Introduction of Valerie Bruemmer
Valerie Bruemmer, Senior Medical Advisor, Eli Lilly
Dec. 12, 2017 · 2:03 p.m.
Introduction of Malou Cristobal
Malou Cristobal, Polytrauma/ TBI / Vestibular Rehabilitation Program, New York Harbour
Dec. 12, 2017 · 2:08 p.m.
Wrap up of Panel Discussion 3
Raj Long , Bill and Melinda Gates Foundation, Vice-Chair, World Dementia Council
Dec. 12, 2017 · 3:23 p.m.
Presentation of Sofia, Robot
Sofia, Robot
Dec. 12, 2017 · 3:28 p.m.
Introduction of Nicoletta Iacobacci
Nicoletta Iacobacci , Singularity University Geneva
Dec. 12, 2017 · 3:32 p.m.
Introduction of Fabrizio Renzi
Fabrizio Renzi, Innovation and Technologies Director, IBM, Rome
Dec. 12, 2017 · 3:36 p.m.
Introduction of Joanna J. Bryson
Joanna J. Bryson , University of Bath, UK
Dec. 12, 2017 · 3:48 p.m.
Introduction of Myshkin Ingawale
Myshkin Ingawale, Facebook
Dec. 12, 2017 · 3:58 p.m.
Introduction of Kathryn Goetzke
Kathryn Goetzke, President, Chief Mood Officer & Founder, The Mood Factory, and Founder, iFred
Dec. 12, 2017 · 4:07 p.m.
Introduction of Nikolaos Mavridis
Nikolaos Mavridis , Interactive Robots and Media Labs, MIT, US
Dec. 12, 2017 · 4:13 p.m.
Keynote
Lynn Posluns , Women's Brain Health Initiative, Canada
Dec. 12, 2017 · 4:52 p.m.
Closing remarks
Mara Hank Moret
Dec. 12, 2017 · 5:12 p.m.
600 views
Thanks
Annemarie Schumacher Dimech
Dec. 12, 2017 · 5:16 p.m.
Closing song
Sylvia Day, Forum host and WBP ambassador
Dec. 12, 2017 · 5:23 p.m.