PKD Life - Winter/Spring 2024 - 17

GROWING
SPECIALIZED
CARE FOR
ADPKD
The PKD Foundation Centers of Excellence and Partner
Clinics program has grown by 57% to help people affected
by ADPKD better manage their disease, maintain and
improve their quality of life, and plan for the future.
By Christina Frank
W
hether you're newly diagnosed with
ADPKD or you've been managing the
disease for decades, where you go for
care matters. That's why, in November
2022, the PKD Foundation launched a Center of
Excellence (COE) program to create a set of criteria
that medical centers can use to help provide optimal
care for ADPKD patients.
" There were two problems we were trying to solve
with the COE program, " says Elise Hoover, vice president
of research programs at the PKD Foundation.
" First, patients were telling us how their nephrologists
didn't know how to manage PKD, they knew more
than their doctors, and they weren't receiving the
kind of care and expertise they expected when
visiting a clinician. Secondly, clinicians told us
that there's a need among their peers to be able to
better specialize in this disease and understand
that it's different from a general or chronic kidney
disease. "
As of November 2023, 37 medical centers have
been designated as COEs. An additional 24 have
been designated as partner clinics-smaller practices
that offer specialized care for people with
PKD but not as many services as a COE.
TO LEARN MORE ABOUT THE PKD FOUNDATION' S CENTERS OF EXCELLENCE, VISIT PKDCURE.ORG/CARECENTERS
17

http://www.PKDCURE.ORG/CARECENTERS

PKD Life - Winter/Spring 2024

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