PKD Life - Summer 2022 - 8

THE KID ZONE
Ages & Stages
Should You
Enroll Your
Child in a
Clinical Study?
Learn how one family
navigated the decision process.
By Christina Frank
I an Jones,* now 9, was 5 years old when he was
diagnosed with ARPKD. During a routine trip to his
pediatrician, his mother mentioned that Ian was having
a lot of trouble staying dry at night. Tests revealed
that he had cysts on his kidneys. There was no family
history of the disease, and Ian's parents had never
heard of PKD.
As research into PKD ramps up, there are increasing
opportunities to enroll children in clinical studies, says
Ashima Gulati, M.D., Ph.D., a pediatric nephrologist
at Children's National Hospital in Washington, D.C.,
where Ian follows up in the Inherited and Polycystic
Kidney Diseases Program. " Choosing to participate is
understandably a difficult decision for many families,
and parents should feel free to ask as many questions
as they want to make an informed decision, " Dr.
Gulati says.
We talked to Ian's mother, Alixandria, about what
went into their family's decision to enroll Ian in a study.
What made you decide to have your son
participate in a clinical study?
Ian's diagnosis was devastating for me. I struggled
with the fact that ARPKD is degenerative and has no
treatment or cure. The only way I knew how to move
forward was to get involved. I joined the PKD Foundation
and connected with other parents on Facebook.
*Not his real name.
8 PKD LIFE * SUMMER 2022
Through these contacts, I
found out about the first clinical
study we would participate
in. I feel it's important
to do what we can to advance
research toward finding treatments
and eventually a cure.
Did you involve Ian in
the decision?
We want Ian to feel empowered
to take ownership of his
body and health. When the
opportunity to participate in
a study came up, I explained
to him that the doctors are
trying to find new medicines
for him and kids like him
with ARPKD. If he participated,
we would be helping
the doctors.
What were your main
concerns about deciding
to enroll him?
Prior to discovering Ian's
ARPKD, I didn't personally
know anyone who had
participated in a clinical
study. I was afraid of what
I didn't know, so I started
asking questions. The study
team did such a great job of
addressing my concerns and
answering Ian's questions
that we were really excited for
him to participate.
What advice do you
have for parents thinking
about enrolling their children
in a clinical study?
If there is a clinical study
that you may be interested
in, contact the research
team and ask questions. The
answers may help you make
your decision and alleviate
some common fears. I would
also suggest talking to your
medical team. They are on
this journey with you, and it's
important to have an open
dialogue with them. Lastly,
trust yourself. You know
what is right for you and
your family.
*
GARY WATERS/THE ISPOT
PKD Life - Summer 2022

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