PKD Life - Summer 2021 - 17

How to Sign Up
Anyone living in the United States with a diagnosis of autosomal dominant
polycystic kidney disease (ADPKD) is encouraged to join the ADPKD Registry.
(Patients under 18 require the permission of a parent or legal guardian.) For
more information and to get started, visit pkdcure.org/registry.
GENDER
Female 71%
Male 28%
Nonbinary,
transgender, or
other 1%
to answer questions about their " on the
ground " experience with accessing specialists,
aff ording their medications, and any
barriers that they have come up against
when trying to get the specialized healthcare
they need.
" This is one of the most actionable modRACE
& ETHNICITY
White 93.8%
Black or African
American 2.4%
Asian 1.9%
Multiple races 1.4%
American Indian or
Alaska Native 0.3%
Native Hawaiian or Other
Pacifi c Islander 0.2%
share with researchers does not include
information that could be used to identify
an individual, such as name, contact
information, or date of birth. "
Registry staff will follow up and ask
patients to share if they decided to sign
up to participate in a trial and what
motivated them to do so-providing
even more valuable information.
NEXT ON THE AGENDA
This year, the ADPKD Registry will add
a new module, called the Healthcare
Access Module. Patients will be asked
In 2021,
the goal is
to increase
both racial
and gender
diversity in
the program.
ules we'll have in the Registry, " Hoover says.
" The others are research outcomes, but this
is going to be something that we can immediately
act upon. When we understand how
many members of our community can actually
aff ord their medication [for example],
that's something that we can immediately
take to our advocacy team or discuss with
our collaborators in the nephrologist community
to understand what changes are
needed in the clinic. "
The new module will be crucial for
advocacy initiatives, says Scott Leezer, who
works with the Foundation and helps direct
its advocacy eff orts in Washington, with the
goal of increasing funding for PKD research
and improving healthcare policy to better
serve people with PKD in terms of access
and coverage.
" As we learn more from these patients,
we're able to better advocate with policymakers, "
Leezer says. He gives specifi c
examples of the types of questions that
could reveal important data: How far away
is your nephrologist? How often do you
go to the nephrologist? Have you been on
dialysis, and for how long? Have you been
able to receive a transplant? Did you receive
it from a living donor?
" So that's the kind of data that helps support
the Foundation's ability to advocate on
behalf of people with PKD, " he says. " And
the only way we're ever going to get that
[data], and the best way we're going to get it,
is from patients telling their story. "
*
PKDCURE.ORG
17
http://www.pkdcure.org/registry http://www.PKDCURE.ORG
PKD Life - Summer 2021

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