PKD Life - Spring 2022 - 21

PKD Foundation
Founders' Council
Andy Betts, Dr. Nathan Levin, and International
Society of Nephrology Past President Dr.
David Harris presented Dr. York Pei, professor
of medicine at the University of Toronto,
and Dr. Bradley Yoder, professor and chair
of the Department of Cell, Developmental
and Integrative Biology at the University of
Alabama at Birmingham Medical School, with
the Lillian Jean Kaplan International Prize
for Advancement at the World Congress of
Nephrology in Melbourne, Australia, in 2019.
(From leſt : Betts, Yoder, Pei, Levin, Harris.)
A GROUNDBREAKING
PATIENT REGISTRY
Another major initiative realized by the
Future Focus Campaign was the fi rst
national ADPKD Registry, established
in September 2019 to enroll ADPKD
patients in clinical studies and recognize
the value of patient-centered research.
Instead of gathering information about
ADPKD patients largely from medical
records, insurance claims, and longitudinal
clinical studies, as had been done
in the past, the Registry has made it possible
to collect important data directly
from patients and their families, who
know fi rsthand what it's like to live with
the disease.
When patients sign up for the Registry
(at pkdcure.org/registry), they are guided
through a series of questionnaires about
their current kidney health, pain levels,
liver cysts, quality of life, family history,
and more. This patient data informs
PKD researchers and connects patients
to clinical studies, should they wish to
participate. As of fall 2021, nearly 2,300
people had joined the Registry.
EDUCATION AND CONNECTION
Finally, Future Focus expanded the
reach of the Foundation's PKD Connect
Photos from 2018 PKDCON. We hope
to be together in person again soon!
Conference (PKDCON). The 2021 Conference
was held virtually because of
COVID-19 and included more than 1,600
registrants from around the world.
Formerly called the PKD Foundation
National Convention, PKDCON
originated in the early 2000s as a
biennial educational event designed
to bring together every part of the PKD
community-patients, their families,
and researchers-so they can learn
from one another. This way, the patient
community understands what research
is being done, while researchers learn
about the real-life needs of people who
are aff ected by the disease.
WHAT'S NEXT
There is no doubt that Future Focus
has been a resounding success. " This
has given the patient community, the
research community, and the volunteers
a lot more energy to get closer to
our vision of ending PKD, " Betts says.
" These are exciting times, and I don't
know if we could have said that fi ve
years ago. "
The PKD Foundation's next campaign,
Accelerating Hope, will focus on
educating healthcare providers about
PKD and creating a national standard
of care at PKDF Centers of Excellence
across the country. Betts also wants to
increase the ADPKD Registry membership
to 10,000 and continue to signifi -
cantly boost the amount of money
devoted to research.
" We still only know about
10% of what we need to
know about PKD, " Betts
says. " This will accelerate
the pace in which
we can get treatments
and treat PKD
patients holistically
much faster. "
*
TO LEARN MORE, VISIT PKDCURE.ORG/FUTURE-FOCUS
21
http://www.pkdcure.org/registry http://www.PKDCURE.ORG/FUTURE-FOCUS
PKD Life - Spring 2022

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