Rare Diseases Symptoms Automatic Extraction
Home
A random Abstract
Our Project
Our Team
A thematic review of scientific and family interests in Canavan Disease: where are the developmentalists?
[canavan disease]
Canavan
Disease
is
a
degenerative
neurological
condition
resulting
in
a
spongy
deterioration
of
the
brain
.
Much
research
has
been
conducted
by
the
medical
community
regarding
this
condition
,
but
little
research
can
be
found
in
the
psychological
literature
.
A
review
of
the
scientific
literature
related
to
Canavan
Disease
using
the
Psychinfo
and
PubMed
databases
was
conducted
covering
a
5
-
year
span
from
2006
through
2011
.
Concurrently
,
a
review
of
parent
initiated
topics
found
on
the
most
popular
Canavan
Disease
Internet
discussion
board
was
conducted
for
comparison
purposes
.
When
comparing
the
topics
discussed
and
information
sought
among
parents
with
the
themes
noted
in
the
extant
scientific
literature
,
researchers
found
an
exceedingly
small
overlap
between
the
two
communities
of
interest
.
In
the
scientific
literature
,
published
research
on
Canavan
Disease
focused
on
three
areas
:
the
biochemistry
of
Canavan
Disease
,
diagnosis
and
genetic
counselling
,
and
clinical
therapeutic
approaches
in
Canavan
Disease
.
Of
the
42
unique
topics
raised
on
a
popular
Internet
discussion
board
,
however
,
only
three
(
7
%
)
fell
into
the
category
of
diagnosis
and
genetic
counselling
,
none
(
0
%
)
fell
into
the
category
of
the
biochemistry
of
Canavan
Disease
,
and
four
fell
into
the
category
of
clinical
therapeutic
approaches
in
Canavan
Disease
(
10
%
)
.
Of
the
four
posts
addressing
clinical
therapeutic
approaches
to
Canavan
Disease
,
only
one
post
truly
overlapped
with
the
topics
addressed
by
the
scientific
community
.
Worded
differently
,
while
these
three
categories
comprise
100
%
of
the
extant
scientific
literature
regarding
Canavan
Disease
,
they
comprise
only
17
%
of
the
parent-raised
topics
.
The
remaining
83
%
of
parent-raised
topics
addressed
concerns
not
currently
being
focusing
upon
by
the
scientific
community
,
namely
,
non-medical
practical
issues
,
information
regarding
specific
characteristics
of
Canavan
Disease
,
non-medical
developmental
and
quality
of
life
issues
,
and
day
-
to
-
day
developmental
and
medical
concerns
.
By
comparing
the
extant
literature
on
Canavan
Disease
with
the
topics
of
interest
raised
by
parents
and
caregivers
,
it
seems
clear
that
there
is
a
significant
'
underlap
'
of
topics
raised
by
these
two
communities
of
interest
,
one
that
may
reflect
a
lack
of
sensitivity
on
the
part
of
the
scientific
community
to
meet
the
needs
of
this
population
of
knowledge
seekers
.
It
is
the
suggestion
of
these
authors
that
developmental
psychology
may
be
the
appropriate
scientific
field
within
which
to
address
this
need
and
fill
this
gap
in
the
current
literature
.
Diseases
Validation
Diseases presenting
"lack of sensitivity on the part of the scientific community"
symptom
canavan disease
You can validate or delete this automatically detected symptom
Validate the Symptom
Delete the Symptom