PKD Life - Summer 2023 - 20

Making a Good Thing
Even Better
I
The PKD Foundation's ADPKD Registry 2.0 adds
more value for participants and researchers.
By Beth Levine
n 2019, the PKD Foundation launched the ADPKD Registry, the first national patientcentered
registry for people with autosomal dominant polycystic kidney disease. Four
years later, the Registry has successfully opened much-needed avenues for discussion
and data exchange between patients and researchers.
In July, the Foundation launched an updated version called PKD Registry 2.0 to make the
program even more valuable to patients and researchers. Here's an overview of the enhancements
made in Registry 2.0:
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LINK TO ELECTRONIC
PATIENT RECORDS
Originally, the Registry only
had patient-reported outcomes
via surveys. In 2.0, participating
patients can choose
to connect their electronic
medical records to the Registry.
This enables researchers
to see patients' latest labs,
medications, and symptoms
from their last doctor's visit.
" It's helpful to be able to
compare that clinical data
alongside the survey data
where we learn about their
family history and about
how PKD impacts their life.
Now, researchers can learn
more about what that disease
progression looks like, " says
Elise Hoover, vice president
of research programs at the
PKD Foundation.
20 PKD LIFE * SUMMER 2023
IMPROVED USER
EXPERIENCE
After holding several forums
with participants, Registry
staff heard loud and clear that
parts of it were unnecessarily
time-consuming. When
patients were asked to update
their information, they had
to re-enter details that hadn't
changed much from the
last time.
For example, there are
25 questions in the core
questionnaire, which asks
about diagnosis, latest kidney
function labs, and symptoms.
It takes a long time to reenter
the information every
year. " We heard from many
different people that that
was a barrier. So, in order to
improve their experience, we
have found a way to autofill
past answers. We're really
excited that that is now being
offered, " says Research Strategist
Vanessa Holliday.
PERSONAL IMPACT
CALENDAR
Holliday was also concerned
about how the Registry could
help participants better
understand their disease.
She came up with the Personal
Impact Calendar: Each
day, users can answer three
short questions about their
disease, such as pain, fatigue,
and how the disease has
affected their lives. Answers
are then reflected in various
colors on the calendar.
" It makes the calendar
interactive with the data
visualization tool, where a
person can select which type
of calendar they would like
to see. They can look at their
fatigue calendar over time
and see the pattern. This not
only helps the user to really
understand how they've been
affected over a period of time,
but they can share the information
with their doctors as
well, " Holliday says.
CARE SUMMARY
Another new feature is the
Care Summary, which highlights
information and trends
such as kidney function, family
history, diet, and water consumption.
" This really clear
format provides background

PKD Life - Summer 2023

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