Rare Diseases Symptoms Automatic Extraction
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A random Abstract
Our Project
Our Team
Developing an information leaflet on 22q11.2 deletion syndrome for parents to use with professionals during healthcare encounters.
[22q11.2 deletion syndrome]
The
purpose
of
this
project
was
to
gather
parents
'
expertise
to
inform
an
educational
leaflet
for
parents
to
share
with
professionals
caring
for
children
with
22
q
11
.
2
deletion
syndrome
(
22
q
11
.
2
DS
)
.
A
mixed
-method
design
was
adopted
.
Data
were
collected
by
one
focus
group
interview
(
n
=
8
)
and
questionnaires
with
92
other
parents
of
children
with
22
q
11
.
2
DS
.
Quantitative
and
qualitative
responses
informed
the
development
of
an
information
leaflet
.
Parents
are
well
positioned
to
assist
in
development
of
information
leaflets
that
can
minimize
"
repeated
storytelling
"
during
professional
encounters
.
