Rare Diseases Symptoms Automatic Extraction
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Attitudes of parents of children with serious health conditions regarding residual bloodspot use.
[phenylketonuria]
Studies
have
shown
that
the
general
public
is
supportive
of
newborn
screening
(
NBS
)
and
supportive
of
the
storage
and
use
of
residual
bloodspots
for
quality
assurance
and
biomedical
research
.
However
,
the
attitudes
of
parents
of
children
with
serious
health
conditions
have
not
been
assessed
.
In
this
study
,
we
assessed
attitudes
of
parents
with
children
who
have
phenylketonuria
(
PKU
)
and
leukemia
towards
NBS
and
storage
and
use
of
residual
bloodspots
for
research
.
A
total
of
49
individuals
were
recruited
and
responded
to
a
validated
41
-
item
survey
regarding
NBS
and
the
retention
and
use
of
residual
bloodspots
.
Of
these
participants
,
22
had
a
child
with
PKU
and
27
had
a
child
with
leukemia
.
We
compared
their
responses
to
those
of
1
,
927
individuals
from
the
general
public
obtained
in
a
previous
study
using
the
same
survey
instrument
.
We
found
that
parents
of
children
with
a
serious
health
condition
had
higher
levels
of
support
than
the
general
public
towards
the
use
of
residual
NBS
samples
for
research
but
similar
attitudes
regarding
choice
and
privacy
protections
.
It
is
important
to
assess
the
attitudes
of
various
stakeholders
for
policy
development
.
