Page 9 - CF Roundtable - Winter/Spring 2026

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Some people can’t afford the travel or time off work.
Others don’t have nearby clinical trial centers.
Some aren’t given information in a way that feels
clear and achievable.
The good news is, researchers are starting to realize
this. More trials are being designed with flexibility,
remote check-ins, at-home monitoring, and financial
support, so it’s not such a burden to take part.
Still, we have a long way to go. Until every person with
CF has a fair chance at participation, the system isn’t
working the way it should.
Finding a Trial That Fits
Okay, so let’s say you’re curious - how do you even find
a trial?
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Clinicaltrials.gov: This is the official government
database. It lists every active trial, but it can feel
overwhelming and difficult to read.
Private directories like pRxEngage: These are
designed to be more user-friendly. They put
everything into plain language, help you figure out
what’s nearby, and even walk you through the steps
so you don’t have to go it alone.
Questions to Ask Before Joining
Here are some good questions to bring to your care or
research team if you’re considering a trial:
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Who is this trial designed for? Trials often have
inclusion (who can join) and exclusion (who can’t)
criteria. Knowing these upfront saves time and
helps you see if it’s worth a conversation with your
care team.
What are the researchers hoping to learn?
Understanding the main goal of the trial helps give
you clarity about how your participation contributes
to the bigger picture.
Is there a possibility of receiving a placebo? Ask
what that means for your care, whether you’ll know
which treatment you’re getting, and how placebos
are used in this specific trial.
How will your health and safety be monitored?
Make sure you understand what tests, check-ins, or
safeguards are in place to protect you during the
study.
How often will you need to visit the hospital or clinic?
Ask about the schedule of clinic visits, whether any
require overnight stays, and how this will fit into
your daily life.
Will there be any costs for participating, or will you be
reimbursed for expenses like travel or time? Clinical
trials should not leave you responsible for out-of-
pocket costs. Confirm whether expenses such as
travel, meals, parking, or time away from work or
school will be reimbursed.
Remember: no question is silly. If something feels
confusing or stressful, speak up. This is your health,
your time, and your decision.
Taking the Mystery Out of the Process
Trials can sound intimidating, but once you know the
lingo, it’s a lot less scary. By simply breaking down
some of the key terms and processes, clinicians and
administrators can help bridge that knowledge gap:
Here are some terms you might hear:
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Screening: This is the “check-up” before the trial
begins. The medical team reviews your history,
asks about your daily health, and may run tests
such as pulmonary function tests or blood work.
The purpose isn’t to keep you out, but to be sure the
trial is safe for you and truly a good fit.
Run-in: This is the “practice round” before
treatment starts. You follow your usual routine so
the team can see your baseline health and be sure
you’re comfortable with the trial tasks, like taking
medicine on schedule or using equipment at home.
Washout: Sometimes you’ll need a short break
from certain medicines before the trial. This clears
them from your system so the new treatment can
be tested safely without unexpected interactions.
Visit frequency: The schedule of when you’ll come
in for appointments or check-ins. Early on, visits
may be more frequent to monitor your safety
closely, then spaced out once things are stable.
 Understanding CF Clinical Trials continued on page 10
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