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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
"appropriate scientific field"
symptom
canavan disease
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