PKD Life - Summer 2021 - 16

ADPKD
Registry
Update
Nearly two years after its launch,
here's what we're learning from this
groundbreaking research tool.
By Christina Frank
U
ntil recently, when ADPKD
researchers were looking for
information about patients,
they gathered it largely from
medical records, insurance claims, and
longitudinal clinical studies. But that
changed in the fall of 2019 when the
PKD Foundation launched the ADPKD
Registry-the fi rst patient-centered
nationwide registry dedicated to and
self-reported by people with ADPKD.
The Registry is groundbreaking in that
it has made it possible to collect important
data directly from people with PKD
and their families, who know fi rsthand
what it's like to live with the disease.
Patients in the Registry answer a series
of questionnaires, or modules, that ask
questions about current kidney health,
pain levels, liver cysts, quality of life,
family history, and more.
" We can now ask questions to patients
on a large scale, " says Elise Hoover, the
PKD Foundation's director of research.
" This not only better informs our
research, education, and advocacy
16 PKD LIFE * SUMMER 2021
PKD
INHERITANCE
Unknown 7%
No family
history 13%
Mother's side 39%
Father's side 41%
AGE AT KIDNEY FAILURE
Average
Youngest
25
Father
22
Mother
58
91
54
As of June 2021, there were 1, 911
participants enrolled in the ADPKD
Registry from all 50 states and the
District of Columbia.
Oldest
84
programs, but it allows for patient-powered
data to answer the questions of PKD
researchers. As we connect the patients
in our Registry to clinical studies, we
accelerate the work that drives our mission
to fi nd treatments and a cure. "
PRIVACY CONCERNS
Understandably, sharing details about
your life and your illness online can feel
risky, but Hoover wants those who might
be on the fence about signing up to
know that respecting privacy and confi -
dentiality is a top priority.
" We know that this information is
confi dential, and so the fi rst thing we did
when building this program was to fi nd
a platform with an excellent reputation
for storing data in a way that protects
patient information, " she says.
Based on patients' answers in the
modules, the Registry sends an email
with information about clinical trials to
those who might be eligible. " We leave
the power in the patient's hands for
whether they want to reach out to the
study team, " Hoover says. " We've established
policies to ensure any data we
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