Lived experience experts: a name created by us for us
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 7 - 11
Опубликована: Март 15, 2023
People
affected
by
a
medical
disorder,
usually
called
patients,
develop
very
special
expertise
living
with
it
every
day.
They
know,
better
than
anyone
else,
how
affects
their
lives,
what
they
go
through
to
get
diagnosis
and
treatment,
treatments
affect
them,
symptoms
or
side
effects
impact
daily
life,
is
like
interact
the
health
care
system.
The
people
who
share
close
family
members
parents,
partners,
siblings,
similar
knowledge.
When
comes
research,
patients
are
seen
only
as
subjects.
In
recent
National
Hemophilia
Foundation
State
of
Science
Research
Summit
subsequent
Blueprint
project,
inherited
bleeding
disorders
were
invited
participate
in
creating
an
agenda
most
important
research
that
needs
be
done,
designing
approach
do
research.
As
full
Working
Groups,
leadership
roles
Blueprint,
realized
needed
title
recognizes
clearly
communicates
unique
expertise,
so
work
understand
bring
table.
chose
term
lived
experience
expert
(LEE).
Especially
rare
disorders,
LEEs
have
unique,
valuable
contribute
all
stages
(e.g.
planning
designing,
participating
recruiting
participants,
communicating
its
importance
results).
Including
will
make
stronger.
Язык: Английский
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research to advance the health of people with inherited bleeding disorders with the potential to menstruate
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 71 - 86
Опубликована: Март 15, 2023
Background
People
who
have
or
had
the
potential
to
menstruate
(PPM)
with
inherited
bleeding
disorders
(BD)
face
particular
challenges
receiving
appropriate
diagnosis
and
care
participating
in
research.
As
part
of
an
initiative
create
a
National
Research
Blueprint
for
future
decades
research,
Hemophilia
Foundation
(NHF)
American
Thrombosis
Hemostasis
Network
conducted
extensive
all-stakeholder
consultations
identify
priorities
PPM
BDs
those
them.Research
design
methods
Working
group
(WG)
4
NHF
State
Science
Summit
distilled
community-identified
into
concrete
research
questions
scored
their
feasibility,
impact,
risk.Results
WG4
identified
important
gaps
foundational
knowledge
upon
which
base
optimal
BDs.
They
defined
44
top-priority
concerning
lifespan
sex
biology,
pregnancy
post-partum
context,
uterine
physiology
bleeding,
bone
joint
health,
health
delivery,
patient-reported
outcomes
quality-of-life.Conclusions
The
needs
will
best
be
advanced
designed
across
spectrum
gender
methodologies
outcome
measures
tailored
this
population,
involving
them
throughout.
Язык: Английский
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for ultra-rare inherited bleeding disorders
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 55 - 70
Опубликована: Март 15, 2023
Background
Ultra-rare
inherited
bleeding
disorders
(BDs)
present
important
challenges
for
generating
a
strong
evidence
foundation
optimal
diagnosis
and
management.
Without
disorder-appropriate
treatment,
affected
individuals
potentially
face
life-threatening
bleeding,
delayed
diagnosis,
suboptimal
management
of
invasive
procedures,
psychosocial
distress,
pain,
decreased
quality-of-life.Research
design
methods
The
National
Hemophilia
Foundation
(NHF)
the
American
Thrombosis
Hemostasis
Network
identified
priorities
people
with
BDs
their
caregivers,
through
extensive
inclusive
community
consultations,
to
inform
blueprint
future
decades
research.
Multidisciplinary
expert
Working
Group
(WG)
3
distilled
highly
feasible
transformative
ultra-rare
BD
research
opportunities
from
community-identified
priorities.Results
WG3
three
focus
areas
potential
advance
needs
all
scored
feasibility,
impact,
risk
priority
initiatives,
including
13
in
systems
biology
mechanistic
science;
2
clinical
research,
data
collection,
infrastructure;
5
regulatory
process
novel
therapeutics
required
collection.Conclusions
Centralization
expansion
expertise
resources,
flexible
innovative
approaches,
inclusion
health
care
professionals
will
be
essential
capitalize
on
outlined
herein.
Язык: Английский
The National Hemophilia Foundation State of the Science Research Summit initiative: executive summary
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 129 - 134
Опубликована: Март 15, 2023
Introduction
The
National
Hemophilia
Foundation
State
of
the
Science
Research
Summit
initiative
sought
to
unify
research
efforts
in
US
inherited
bleeding
disorders
(BDs)
community
around
key
topics
importance
people
living
with
BDs,
lived
experience
experts.Areas
covered
This
community-led
and
-informed
project
focused
on
six
broad
areas
–
hemophilia
A
or
B;
von
Willebrand
Disease
(VWD),
platelet
dysfunctions
other
mucocutaneous
BDs;
ultra-rare
unique
challenges
potential
menstruate
diversity,
equity
inclusion,
health
services
research,
implementation
science;
facilitating
BD
through
designing
an
optimizied
infrastructure,
enabling
resources
funding,
furthering
workforce
capabilities
required
execute
priorities.Expert
opinion
work
summarized
here,
accompanying
supplement
manuscripts
,
has
implications
not
only
for
population
but
globally
who
have
BDs.
information
is
equally
relevant
hemophilia,
VWD,
spectrum
disorders,
factor
deficiencies,
all
BDs
as
it
care
providers
researchers
treatment
globally.
Язык: Английский
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities to transform the care of people with hemophilia
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 19 - 37
Опубликована: Март 15, 2023
Background
Decades
of
research
have
transformed
hemophilia
from
severely
limiting
children's
lives
to
a
manageable
disorder
compatible
with
full,
active
life,
for
many
in
high-income
countries.
The
direction
future
will
determine
whether
exciting
developments
truly
advance
health
equity
all
people
(PWH).
National
Hemophilia
Foundation
(NHF)
and
American
Thrombosis
Hemostasis
Network
conducted
extensive
inclusive
all-stakeholder
consultations
identify
the
priorities
inherited
bleeding
disorders
those
who
care
them.Research
design
methods
Working
group
(WG)
1
NHF
State
Science
Research
Summit
distilled
community-identified
A
B
into
concrete
questions
scored
their
feasibility,
impact,
risk.Results
WG1
defined
63
top
priority
concerning
arthropathy/pain/bone
health,
inhibitors,
diagnostics,
gene
therapy,
pediatric
adult
transition
care,
disparities
faced
by
community,
cardiovascular
disease.
This
has
potential
empower
PWH
thrive
despite
lifelong
comorbidities
achieve
new
standards
wellbeing,
including
psychosocial.Conclusions
Collaborative
delivery
be
key
capitalizing
on
current
horizon
treatments
harnessing
technical
advances
improve
diagnostics
testing,
PWH.
Язык: Английский
Building the foundation for a community-generated national research blueprint for inherited bleeding disorders: research priorities for mucocutaneous bleeding disorders
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 39 - 54
Опубликована: Март 15, 2023
Background
Excessive
or
abnormal
mucocutaneous
bleeding
(MCB)
may
impact
all
aspects
of
the
physical
and
psychosocial
wellbeing
those
who
live
with
it
(PWMCB).
The
evidence
base
for
optimal
diagnosis
management
disorders
such
as
inherited
platelet
disorders,
hereditary
hemorrhagic
telangiectasia
(HHT),
hypermobility
spectrum
(HSD),
Ehlers-Danlos
syndromes
(EDS),
von
Willebrand
disease
(VWD)
remains
thin
enormous
potential
targeted
research.Research
design
methods
National
Hemophilia
Foundation
American
Thrombosis
Hemostasis
Network
initiated
development
a
Research
Blueprint
Inherited
Bleeding
Disorders
extensive
all-stakeholder
consultations
to
identify
priorities
people
care
them.
They
recruited
multidisciplinary
expert
working
groups
(WG)
distill
community-identified
into
concrete
research
questions
score
their
feasibility,
impact,
risk.Results
WG2
detailed
38
high
priority
concerning
biology
MCB,
VWD,
qualitative
function
defects,
HDS/EDS,
HHT,
disorder
unknown
cause,
novel
therapeutics,
aging.Conclusions
Improving
our
understanding
basic
large
cohort
longitudinal
natural
history
studies,
collaboration,
creative
approaches
therapeutics
will
be
important
in
maximizing
benefit
future
entire
MCB
community.
Язык: Английский
The National Hemophilia Foundation’s State of the Science Research Summit: the foundation of a national research blueprint for inherited bleeding disorders
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 1 - 5
Опубликована: Март 15, 2023
KEYWORDS:
Bleeding
disorderblueprintcommunityhealth
equityNational
Hemophilia
Foundationpatient-centricresearch
Язык: Английский
Generative AI for Threat Intelligence and Information Sharing
Advances in digital crime, forensics, and cyber terrorism book series,
Год журнала:
2024,
Номер
unknown, С. 191 - 234
Опубликована: Сен. 12, 2024
Collaboration
in
providing
threat
intelligence
and
disseminating
information
enables
cyber
security
professionals
to
embrace
digital
most
successfully,
whose
risks
are
ever-changing.
This
article
dwells
on
the
capacity
of
machine
change
by
categorising
indicators
compromise
(IOC)
actors,
then
highlights
limits
traditional
methods.
Among
Artificial
tools
such
as
generative
adversarial
networks
(GANs)
Variational
autoencoders
(VAEs),
which
key
innovators,
one
can
create
synthetic
or
fake
data
that
emulates
real
attack
scenarios
past.
allows
cyber-related
be
analysed
differently
from
before.
In
addition,
this
feature
secure
stakeholder
collaborations.
It
is
also
meant
mainly
for
factual
protects
private
but
exchange
helpful
information.
clear
fact
showcasing
real-world
examples
demonstrates
Al's
automation
through
cybersecurity
detection.
Язык: Английский
Soliciting international perspectives on an American national research agenda for inherited bleeding disorders
Expert Review of Hematology,
Год журнала:
2023,
Номер
16(sup1), С. 13 - 17
Опубликована: Март 15, 2023
KEYWORDS:
Communityglobal
health
equityinherited
bleeding
disordersinternational
perspectivelived
experience
expertNational
Hemophilia
Foundationresearch
prioritiesresource
constraints
Язык: Английский