Page 17 - CF Roundtable - Winter/Spring 2026

draws throughout. So much blood! I’ve swallowed pills,
breathed into a bag, had a study drug placed in my nose, spit
into a test tube, inhaled different study meds, collected and
mailed stool samples to two different labs, and once I wore
a fanny pack with a study drug and pump connected to an IV
for five days. I would do it all again.
In research I’ve participated in different testing procedures
used in CF care and evaluation such as the Nasal Potential
Difference (NPD) and Lung Clearance Index (LCI). The
NPD test looks for abnormal function of the CFTR gene
in the nose via electrodes attached to a voltmeter and the
subject’s nasal mucosa and forearm. NPD can be used to
diagnosis CF. A specially trained person is needed to operate
the equipment, yet another scheduling job for the research
coordinator! In one study I had the lengthy and seemingly
complicated NPD test several times. Another diagnostic tool
I’ve been introduced to during research is the LCI. The LCI
measures how quickly an inhaled gas is cleared from the
lungs during exhalation, a measure of pulmonary function.
Now when someone mentions NPD or LCI in a presentation
or community discussion I understand what they are talking
about.
Being in a clinical research study is an investment of time.
Most studies have several visits that can last a few to
several hours. There are visits for dosing of the study drug,
observation, and follow up. The effects of the study drug,
procedures, or treatments can be challenging for participants.
All studies offer an option to stop at any time. On the plus side
we are compensated for our time, discomfort, and effort.
I’ve Finished the Study. Now What?
There may be a sense of let down or relief when the study is
finished. Then we wait to learn the outcome. Has the drug
been shown to be safe and effective? Will it progress through
the pipeline? Did I get the drug? Some studies may show
minimal or no benefit and the drug doesn’t move forward.
There may be continued research before new drugs are
approved and available to the CF community. I feel some
pride seeing data from studies I’ve participated in show up
in a presentation at a conference. In time there will be notice
SEEKING INTERVIEWEES FOR OUR
“IN THE SPOTLIGHT” COLUMN
We would love to showcase you and your life in our
magazine. If you are interested in being interviewed for
an upcoming issue of CF Roundtable, please email us
at itsinterviews@usacfa.org. We will pair you with an
interviewer who will arrange a time to talk and then write
questions based on your answers for you to fill out at
your leisure. Each interview is crafted to bring out what
each person wants featured about themselves. To go
about the outcome of the study, including whether you
received the study drug in a placebo-controlled trial. I was
recently surprised to learn that I didn’t receive the study drug
in a 2019 study. I was sure I’d had the drug.
I’ll keep raising my hand for studies. I have time and it feels
good to make a contribution to the CF community. I learn
new things about my health and CF by taking part in research
and trying new meds and treatments. I like to follow “my”
drugs in the pipeline. I am hopeful when I feel improvement
from a study drug, yet it can be a long wait until it is available
for me and for others. Those who are ineligible for or unable
to tolerate the side effects of Trikafta are especially eager
for progress in modulator therapy or different treatment
avenues. We will soon learn if Alyftrek, the newest modulator
approved by the FDA, will have fewer challenging side effects.
And we continue to watch and wait for the research that will
bring highly effective treatments to all people with CF.
Finally, we need clinical research to improve our lives with CF
and researchers need us to make it happen.
Would you like to be featured in our magazine?
Do you want to be in the spotlight?
Let us shine a spotlight on you and your life!
along with your interview, we ask for two photos that will
go into the magazine: one headshot and one photo of
you with your peeps, family, pet, on vacation, graduation,
etc. We want you to shine so that others can benefit from
your experiences living with this shared disease.
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