PKD Life - Summer 2023 - 27

T he PKD Foundation's
ADPKD Registry is the
first North American database
of patients with autosomal
dominant polycystic
kidney disease. Through
its participants, we collect
information in a standardized
format that tells us about
the patient journey, unmet
medical needs, and patient
preferences, revealing more
about the disease burden
on your everyday lives and
those of your families.
Since its launch, data
from the ADPKD Registry
has given us insights into
the daily impact of PKD,
reported family history,
dietary restrictions, and
more. This year, we'll be
learning even more about
what the ADPKD experience
is like for our community.
This summer, new features
were added to the ADPKD
Registry. They provide more
information for researchers
and include new benefits
for participants:
* Electronic Medical
Records: You can now
securely share your health
records to maximize
your impact.
* Personal Impact
Calendar: This tool helps
you track your pain, fatigue,
and daily life with PKD.
* Clinic Report: You can
share comprehensive summaries
of your data with
your doctor to show your
kidney function over time,
family history, quality of
life, and other information
and trends.
The PKD Foundation
research team carefully
planned and executed these
updates with our patients
at the core. Part of building
the largest data set of ADPKD
patient-reported outcomes
means collecting data that
deepens the understanding
of ADPKD, for patients and
clinicians. Through these
new features, participants
can share even more valuable
information with researchers
while being provided a
visual representation of what
their life with ADPKD looks
like. (Learn more about the
Registry's new features on
Page 20.)
*
WALK FOR PKD
T he 2023 Walk for PKD season is in full
swing, and the countdown to our fall events
is on! After two years of virtual Walks, we were
able to reunite in person for the 2022 Walk for
PKD. Seeing the community back together,
walking side by side, was truly reinvigorating.
What exactly did the 2022 Walk for PKD look
like? Let's break it down.
* Supporters helped raise $1,141,729, exceeding
our $1 million goal.
* Nearly 2,000 friends, family members, clinicians,
and researchers participated across
the country.
* 300 teams signed up to raise awareness and
funding for PKD research.
A big shoutout goes to our top three Walks
from 2022: San Antonio, Chicago, and Boston!
As plans for this year's Walk for PKD move
forward, we'll continue our hybrid approach.
Want to attend in person? Great. Prefer to
join us virtually from the comfort of your own
neighborhood? That works too! No matter
where you walk from, we're all striving for the
same goal: a cure for polycystic kidney disease.
Be sure to check our progress toward our
$1 million fundraising goal on any of our social
media channels, and consider supporting participants
in your area at walkforpkd.org.
*
LEARN MORE
Exciting changes are happening for the ADPKD
Registry, and we want you to join us on the journey.
For more information, visit connect.pkdcure.org/
adpkd-registry.
Thank you to our National Presenting
Sponsor, Otsuka Pharmaceutical!
PKDCURE.ORG
27
http://www.walkforpkd.org http://connect.pkdcure.org/adpkd-registry http://connect.pkdcure.org/adpkd-registry http://www.PKDCURE.ORG
PKD Life - Summer 2023

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