1. The
Coordina,on
of
Rare
Diseases
at
Sanford
(CoRDS)
Registry
A
Pa,ent
Registry
for
all
Rare
Diseases
David
A.
Pearce,
PhD,
Catherine
Olson,
Aus7n
Letcher,
Alyssa
Mendel
CoRDS
Registry,
Sanford
Research,
Sioux
Falls,
SD
Sanford
Children’s
Health
Research
Center
at
Sanford
Research
has
established
the
Coordina7on
for
Rare
Diseases
at
Sanford
(CoRDS)
• CoRDS
is
a
rare
disease
pa,ent
registry
open
to
individuals
with
any
rare
or
uncommon
disease
and
to
those
who
are
undiagnosed
• CoRDS
houses
pa,ent-­‐reported
contact
and
clinical
informa,on
• The
goal
of
CoRDS
is
to
accelerate
research
into
rare
diseases
by
allowing
researchers
to
access
registry
data
and
to
contact
eligible
par,cipants
for
research
studies
Data
Collec9on
Pa,ent-­‐reported
data
is
collected
through
the
CoRDS
ques,onnaire
or
applicable
disease-­‐specific
ques,onnaire.
All
CoRDS
Ques,onnaires:
• Are
available
in-­‐person,
by
phone,
mail,
online
or
email
• U,lize
40
of
the
Common
Data
Elements
(CDEs)
recommended
by
the
NIH
Office
of
Rare
Disease
Research
and
collects
31
other
data
fields
from
clinical,
diagnos,c,
family
history,
etc.
• Collect
basic
clinical
and
sociodemographic
informa,on
sufficient
to
iden,fy
poten,al
research
par,cipants
• Collect
contact
informa,on
needed
to
no,fy
par,cipants
about
future
research
opportuni,es
Data
Management
Par,cipants
are
prompted
to
update
their
data
annually.
Data
Dissemina9on
• A
Scien,fic
Advisory
Board
(SAB)
reviews
applica,ons
from
researchers
prior
to
gran,ng
access
to
de-­‐iden,fied
registry
data
for
research
purposes
• Contracted
Pa,ent
Advocacy
Groups
(PAGs)
may
access
select
registry
data
for
non-­‐research
purposes
• Par,cipants
may
elect
to
share
de-­‐iden,fied
data
with
other
registries
to
improve
understanding
of
rare
diseases
and
to
avoid
duplica,on
of
exis,ng
registry
efforts
Background
Methods
Healthcare
professionals
may
refer
their
pa7ents
to
the
CoRDS
Registry.
Pa7ent
advocacy
groups
may
refer
par7cipants
through
social
media,
physicians
and
researchers.
Contact
CoRDS
to
request
brochures
and
flyers,
or
refer
pa,ents
to
contact
CoRDS
directly
via
the
informa,on
below.
Enrollment
can
be
completed
online,
in-­‐person
(Sanford
Health
–
Sioux
Falls),
by
email,
or
postal
mail.
Researchers
studying
any
rare
disorder(s)
are
invited
to
submit
an
applica7on
to
access
the
registry.
Contact
CoRDS
Director,
Catherine
Olson,
to
begin
the
applica,on
process.
CoRDS
can
accelerate
research
by:
• Providing
up-­‐to-­‐date,
relevant,
pa,ent-­‐reported
clinical
data
on
a
wide
range
of
rare
diseases
for
data
analysis
• Collect
disease-­‐specific
data
for
compara,ve
analysis
between
condi,ons
in
order
to
develop
underlying
mechanisms
• Offering
a
mechanism
to
iden,fy
and
contact
eligible
par,cipants
for
research
studies
or
clinical
trials
• Serving
as
a
tool
to
educate
physicians,
researchers
and
par,cipants
about
rare
condi,ons
in
order
to
spread
awareness
Refer
Individuals
Contact
CoRDS
For
more
informa,on,
contact:
The
CoRDS
Team
(877)
658-­‐9192
cords@sanfordhealth.org
www.sanfordresearch.org/CoRDS
2015
First
Quarter
Par,cipa,on
Par,cipant
Recruitment
and
Data
Access
As
of
April,
30,
2015,
CoRDS
represents:
• 1790
fully
enrolled
par,cipants
• 1440
par,cipants
in
screening
• 333
rare
diseases
• 50
U.S.
states
• 31
countries
• 67
partner
organiza,ons
Results
Access
the
Registry
0
50
100
150
200
250
300
Par7cipants
Date
Par7cipant
Status
Report
Total
Screened
Total
Enrolled
Total
Re-­‐consented