Page 10 - CF Roundtable - Winter/Spring 2026

UNDERSTANDING CF CLINICAL TRIALS (continued from page 9)
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Decentralized or remote options: Some trial
activities can be done from home or a local lab
instead of traveling to the main clinic. This may
include video visits, at-home breathing tests, or
wearables to make participation easier.
Reimbursements: Trials should not cost you
money to join or take part in. Most cover expenses
like travel, meals, parking, or childcare. Ask what’s
included so you can plan with peace of mind.
Support: You won’t go through it alone. Many trials
offer help with paperwork, transport, or questions.
Emotional support and peer connections are often
available, too.
Why Say Yes?
So why should you consider joining a clinical trial?
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You might not see direct benefits yourself. That’s
the hard truth.
But others after you will. Every single advance in CF
care happened because patients said yes to being
part of a trial.
Trials also sometimes give you sooner access
to treatments, extra monitoring, and a chance to
shape the future of CF care.
Knowing these ahead of time can take away a lot of
the fear.
The Emotional Side
At the end of the day, novel treatments and procedures
cannot be developed without trials, and trials need
patients to test possible treatments. Every step
forward brings us closer to a world where CF isn’t all-
consuming.
Trials aren’t just about science. They’re about people. It
can feel scary to join something new, especially when
your health is on the line. Anxiety, doubt, and “what if”
questions are normal.
Final Thoughts
The thing that helps? Support. Most trials connect
you with people who’ve been through it before or with
groups where you can talk it out. The CF community
is strong—participating in trials is another way our
community comes together to support and empower
one another.
Every breakthrough in cystic fibrosis, every new drug,
every treatment, has been made possible because
people chose to take part in trials not just for themselves,
but for the whole community. Data shows that the CF
community has proven its desire to come together and
support future generations of people with CF.
By making trials easier to join and more inclusive,
we can ensure no one is left behind in the search for
better treatments. Together, each step we take brings
us closer to the day when cystic fibrosis is no longer a
life-defining condition, but a challenge we’ve overcome.
References
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Goss, C. H., Rubenfeld, G. D., Ramsey, B. W., & Aitken,
M. L. (2005). Clinical Trial Participants Compared
with Nonparticipants in Cystic Fibrosis. American
Journal of Respiratory and Critical Care Medicine,
173(1), https://www.atsjournals.org/doi/10.1164/
rccm.200502-273OC
Guo, J., Garratt, A., & Andrew Hill. (2022). Worldwide
rates of diagnosis and effective treatment for
cystic fibrosis. Journal of Cystic Fibrosis, 21(3),
https://www.sciencedirect.com/science/article/
pii/S1569199322000315
10 CF Roundtable Winter/Spring 2026