PKD Life - Spring 2020 - 28

FOUNDATION FOCUS

ADPKD Registry Update
of early April, over 1,500 individuals have
A ssigned
up for the ADPKD Registry-the first

patient-centered nationwide registry dedicated to
and self-reported by people with autosomal
dominant polycystic kidney disease-which
launched in September 2019.
Patient registries are a critical component in the
advancement of medical research, especially with
rare diseases like ADPKD. By collecting patient
information into a centralized database, the ADPKD
Registry is a valuable resource that can advance our
understanding of ADPKD, reveal new information
about factors that affect disease severity, and set
the stage for efficiently developing clinical trials
of new treatments.

MAKING A DIFFERENCE

As the largest patient-centered resource of its
kind, the ADPKD Registry engages the entire PKD
community around our singular vision, which is
uniting patients, families, physicians, and researchers
in the quest to #endPKD and providing hope for
future generations.
Designed with a focus on patient-centered outcomes
and patient empowerment, the ADPKD Registry is a
practical way for people to get involved while having an
impact for generations to follow. Those who take part
in surveys will generate valuable information that can

assist researchers in better understanding PKD and
advancing potential new treatments along the path
toward approval.
At the PKD Foundation, we believe the Registry
offers patients an opportunity to participate in PKD
research in a way that's meaningful and attainable.

NEW DEVELOPMENTS

The Foundation has established a steering committee
consisting of PKD clinicians and researchers as
well as a Patient Advisory Group to ensure that the
patient perspective is included in management and
expansion of the Registry. We've also formed an
Industry Advisory Group to maximize the impact the
data in the Registry will have on drug development.
A new module on quality of life for people with
PKD was released in March, and all Registry participants should have received an email asking them to
fill it out. New modules will be released every quarter,
and we're excited to learn from them.

LEARN MORE

Sign up at pkdcure.org/registry and encourage your family and friends with ADPKD to do so, too. The more people
involved, the more powerful our results will be.

READ PKD LIFE ONLINE

PKD Life is available online at pkdcure.org/
pkdlife. Read current and past editions and
subscribe to future editions. Share your favorite
sections on social media, and make sure to tag
the PKD Foundation and use the hashtag #PKDLife.
@pkdfoundation
@PKDFoundation
@pkdfoundation

PKD LIFE * SPRING 2020

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PKD Life - Spring 2020

Table of Contents for the Digital Edition of PKD Life - Spring 2020