PKD Life - Spring 2022 - 27

YULIYA BARANYCH/GETTY IMAGES
Patient-Powered
Research
T he contributions
of ADPKD Registry
participants are making
a real diff erence in
research about ADPKD.
We've learned more
about its symptoms, its
progression, its treatment,
and its impact
on quality of life. Be
sure to check out
the Registry Annual
Report, to be released
this month, for important
insights.
ARPKD RESOURCES
T he PKD Parents Chapter has been serving
parents of children with ARPKD and
ADPKD since 2000. The PKD Parents Chapter
off ers support, compassion, and guidance,
and it helps connect families with experts
and other local PKD families. In addition, the
Foundation provides:
* Patient and physician education resources
* ARPKD clinical study opportunities
* Information about the PKD Foundation's
investment in ARPKD research
* A calendar with national awareness events
Visit pkdcure.org/arpkd to access these
resources and more.
*
WHY SHOULD
YOU SIGN UP?
The patient voice is our
most powerful tool in
the fi ght to #endPKD.
Over the past year,
we've learned about
diffi culties patients
have had accessing
medical care for
their PKD, COVID-19
outcomes, and experiences
with brain
aneurysms. Collecting
this data on a nationwide
scale-from
nearly 2,500 ADPKD
patients-helps us
connect with researchers
on new studies,
advocate for resources
at the federal level, and
develop new education
for both patients
and clinicians.
Beyond enabling
the PKD Foundation to
collect data about the
patient experience, the
ADPKD Registry helps
match people to clinical
studies. Once Registry
participants complete
their modules, we let
them know if they
might be a good fi t for
a study. Enrollment in
studies is based on age,
disease stage, kidney
function, and other factors.
The faster ADPKD
studies enroll patients,
the sooner the Food
and Drug Administration
will be able to evaluate
the data for new
potential therapies.
This data also helps
drug developers know
the size of the ADPKD
population available
for studies and their
location throughout
the U.S. to identify new
trial sites.
If you're already
enrolled, thank you for
contributing to PKD
research! If you haven't
yet signed up, check it
out at pkdcure.org/
registry.
*
PKDCURE.ORG
27
http://www.pkdcure.org/registry http://www.pkdcure.org/registry http://www.pkdcure.org/arpkd http://www.PKDCURE.ORG
PKD Life - Spring 2022

Table of Contents for the Digital Edition of PKD Life - Spring 2022
