Rare Diseases Symptoms Automatic Extraction
Home
A random Abstract
Our Project
Our Team
Portal for Families Overcoming Neurodevelopmental Disorders (PFOND): Implementation of a Software Framework for Facilitated Community Website Creation by Nontechnical Volunteers.
[aniridia]
The
Portal
for
Families
Overcoming
Neurodevelopmental
Disorders
(
PFOND
)
provides
a
structured
Internet
interface
for
the
sharing
of
information
with
individuals
struggling
with
the
consequences
of
rare
developmental
disorders
.
Large
disease-impacted
communities
can
support
fundraising
organizations
that
disseminate
Web-based
information
through
elegant
websites
run
by
professional
staff
.
Such
quality
resources
for
families
challenged
by
rare
disorders
are
infrequently
produced
and
,
when
available
,
are
often
dependent
upon
the
continued
efforts
of
a
single
individual
.
The
project
endeavors
to
create
an
intuitive
Web-based
software
system
that
allows
a
volunteer
with
limited
technical
computer
skills
to
produce
a
useful
rare
disease
website
in
a
short
time
period
.
Such
a
system
should
provide
access
to
emerging
news
and
research
findings
,
facilitate
community
participation
,
present
summary
information
about
the
disorder
,
and
allow
for
transient
management
by
volunteers
who
are
likely
to
change
periodically
.
The
prototype
portal
was
implemented
using
the
WordPress
software
system
with
both
existing
and
customized
supplementary
plug-
in
software
modules
.
Gamification
scoring
features
were
implemented
in
a
module
,
allowing
editors
to
measure
progress
.
The
system
was
installed
on
a
Linux-based
computer
server
,
accessible
across
the
Internet
through
standard
Web
browsers
.
A
prototype
PFOND
system
was
implemented
and
tested
.
The
prototype
system
features
a
structured
organization
with
distinct
partitions
for
background
information
,
recent
publications
,
and
community
discussions
.
The
software
design
allows
volunteer
editors
to
create
a
themed
website
,
implement
a
limited
set
of
topic
pages
,
and
connect
the
software
to
dynamic
RSS
feeds
providing
information
about
recent
news
or
advances
.
The
prototype
was
assessed
by
a
fraction
of
the
disease
sites
developed
(
8
out
of
27
)
,
including
Aarskog-
Scott
syndrome
,
Aniridia
,
Adams-
Oliver
syndrome
,
Cat
Eye
syndrome
,
Kabuki
syndrome
,
Leigh
syndrome
,
Peters
anomaly
,
and
Rothmund-
Thomson
syndrome
.
The
editor
progress
score
was
used
to
measure
performance
for
a
portion
of
sites
.
The
PFOND
system
provides
a
convenient
and
structured
Internet
resource
for
the
facilitated
creation
of
information
resources
for
families
confronted
by
rare
disorders
.
The
system
empowers
volunteers
to
participate
in
the
creation
of
quality
content
,
while
allowing
for
the
inevitable
turnover
of
contributors
over
time
.
The
next
phase
of
PFOND
development
will
focus
on
volunteer
participation
in
system
development
and
community
engagement
.
Diseases
Validation
Diseases presenting
"structured internet interface for the sharing of information"
symptom
aniridia
kabuki syndrome
You can validate or delete this automatically detected symptom
Validate the Symptom
Delete the Symptom