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The Congenital Diaphragmatic Hernia Study Group registry update.
[congenital diaphragmatic hernia]
The
Congenital
Diaphragmatic
Hernia
Study
Group
(
CDHSG
)
is
an
international
consortium
of
centers
that
prospectively
collect
and
voluntarily
contribute
data
about
live-born
CDH
patients
they
manage
.
These
data
are
compiled
to
form
a
registry
from
which
any
participating
center
may
utilize
the
dataset
to
answer
specific
clinical
questions
and
monitor
outcomes
.
Since
its
inception
in
1995
,
112
centers
have
participated
(
including
66
centers
from
13
countries
currently
active
)
,
data
on
more
than
eight
thousand
total
children
have
been
collected
,
and
35
manuscripts
have
been
generated
using
registry
data
.
This
review
covers
the
formation
and
structure
of
the
CDH
study
group
and
registry
,
including
function
,
center
involvement
,
and
the
evolution
of
data
collection
.
We
also
review
reports
generated
by
the
CDHSG
,
with
particular
focus
on
the
work
after
2008
.
International
multicenter
consortiums
,
such
as
the
CDHSG
,
allow
physicians
that
manage
uncommon
,
complex
,
heterogeneous
diseases
to
develop
evidence-based
hypotheses
and
conclusions
for
clinical
questions
.
Diseases
Validation
Diseases presenting
"monitor outcomes"
symptom
congenital diaphragmatic hernia
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