PKD Life - Spring 2020 - 5

MYTH: YOU'LL BE
A GUINEA PIG.

Awareness

3 Common Myths
About Clinical Trials
there's only one disease-modifying
W hile
medication currently approved for the

COFFEE: MELPOMENEM/GETTY IMAGES. ILLUSTRATION: IKON IMAGES/GETTY IMAGES.
ID BRACELET: COURTESY OF LAUREN'S HOPE.

treatment of PKD, several clinical trials for
potential treatments are in the works. You may
hesitate to participate in a trial, however, because
of misconceptions about how they work. Here, we
clear up three common myths about clinical trials:

FACT: Some research done in
the distant past was not heavily
regulated, but these days safety
is paramount, says Ronald D. Perrone, M.D., scientific director of the
Clinical and Translational Research
Center at Tufts Medical Center in
Boston. "Everyone who participates
in research, whether it be a doctor
or a nurse or a study coordinator,
has to take courses in research
education," he says. "There is
an internationally agreed-upon
system that governs how clinical
trials are performed, and every trial
has a safety board that monitors
the trial in real time."Institutional
review boards-composed of physicians, nurses, scientists, clergy,
social workers, pharmacists, and
ethicists-carefully review all trials
before they can be initiated, during
an annual review, and when new
information becomes available.

MYTH: ONCE YOU
COMMIT TO A TRIAL,
YOU CAN'T CHANGE
YOUR MIND.

FACT: Joining a clinical trial is
voluntary. You will need to sign an

informed consent form to participate, but you are free to leave at any
time. However, you should always
let the trial team know in advance
that you'd like to leave so that you
can stop any treatments safely.

MYTH: HEALTH
INSURANCE DOESN'T
COVER THE COST.

FACT: There are two types of costs
associated with a clinical trial.
Research costs-which include
researchers, doctors, other healthcare providers, blood tests, imaging tests (e.g., CT or MRI scans),
electrocardiograms, study medications or placebos, and data collection-are paid for by the sponsor
of the trial (a granting agency such
as the National Institutes of Health
or a biopharmaceutical company).
Patient care costs are those involving regular medical care associated with the underlying medical
condition, such as routine doctor
visits or laboratory testing, and
other medical care not specifically
part of the trial. Health insurance
usually covers patient care costs,
but check with your insurance
provider before joining a trial.
- Christina Frank

Community Connection
WHAT DO YOU DO TO RELIEVE STRESS AND ANXIETY?
"First, I accept that I have
PKD and have learned
to adjust to the lifelong
challenge of managing the
disease before and after
a transplant. Second, I've
made exercise a priority in my
life. When you have a problem that is
bothering you or a particularly stressful day,
there is something about cardiovascular
exercise that helps to minimize the
problem. Lastly, I meditate every morning
for 10 minutes before I start my day using
an app called Headspace. I describe it
as a combination of relaxing along with
breathing exercises. It's become a habit, and
if I miss a day, I feel the difference."

"Swimming is my main stress
reliever. I was diagnosed
with PKD at age 16 with
a strong family history
of PKD, and over the
years swimming has been
my go-to activity for life's
hurdles. Swimming helps me
problem-solve, sleep better, and keep
a positive attitude. In 2005, when I was
51, a generous co-worker whom I had
just met donated a kidney to me. After
recovery, I resumed swimming again.
In 2018, I competed in the Transplant
Games of America in Salt Lake City
and received the silver medal in the
500-meter swim for age 60-69."

"My go-to stress reliever
is exercise. I love to
bicycle and swim.
As a swimmer in high
school, the workouts
were a great quiet
time to focus on keeping
in shape and block out all
other issues. Bicycling also gave me
the ability to just go out and ride
by myself when I needed it most.
Also, my faith has given me a way to
look at the situation and know that
I am not doing this alone. Plus, my
support group gives me plenty of
people to share my story with and
receive advice."

-Dave Callahan, Danville, California

-Patti O'Grady Ruffin, San Antonio, Texas

-John Burge, Cedar Rapids, Iowa

F I N D M O R E S TO R I E S A N D R E S O U R C E S AT C O N N E C T. P K D C U R E .O R G

PKD_SP20_04-05_FreshStart.indd 5

3/30/20 11:12 AM

http://CONNECT.PKDCURE.ORG

PKD Life - Spring 2020

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