Page 21 - CF Roundtable - Winter/Spring 2026

way, but the great part about clinical
trials is that you can stop at any time.
The data can still be used for the trial.
Another factor in deciding is weighing
the risks and benefits. Do the risks
outweigh the benefits? Sometimes
looking at the risks can be overwhelming
because the drugs are experimental
and could potentially have adverse
reactions. In the three trials I have been
a part of, the benefits outweighed the
risks. For the observational one, there
weren’t any risks except fatigue or
being out of breath from the activities
that needed to be performed. My heart
rate may have increased, I might have
had bruising from bloodwork, or had
high blood pressure. For the two drug
trials the benefits also outweighed the
risks. The phage study was specifically
for the Pseudomonas I was growing
and at that point the bacteria had
become resistant to all medications
except one and that one drug wasn’t
working that well on the bacteria, so I
was willing to do anything. The other
drug was beneficial as well because
it targeted inflammation which was a
reason why my lung function wasn’t
great–everything was inflamed.
The risks associated with these
drugs, aside from potentially affecting
bloodwork, were minimal so I decided
to do the studies. The main reason
for me was compensation. Clinical
trials are voluntary and there are risks
involved; compensation is therefore
a part of the decision to do them. I
am volunteering to use my body as a
test subject for science and for future
CF treatments. Compensation is an
incentive for participating in clinical
trials and I had to decide whether it
was worth putting myself through
the necessary tests performed, drugs
taken, activities performed, doctor
visits needed, and the time committed.
One last deciding factor for a clinical
trial is how my health is at that time.
When I was constantly sick and my
health was all over the place, I was
eager to do specific clinical trials
related to my lungs and the bacteria in
my lungs. I wanted to try anything and
everything that could potentially boost
my lung function and quality of life as
I was sick and tired of being sick and
tired. I really didn’t care to do any clinical
trials that may have to do with my GI
system or sugar levels as that was not
on the forefront of my mind. I needed
trials that were specifically targeted
towards lung function and attacking
the Pseudomonas colonization in my
lungs. As my health got better, I have
been more open to doing a variety of
clinical trials (if I qualify). It doesn’t
have to be solely for the lungs, it can be
for physique, weight, mental health, my
pancreas, GI system, etc. My health is
much more stable now, so I’d be willing
to try different trials.
Overall clinical trials are not a one-size-
fits-all and there are various reasons
why one might choose (or not choose)
to participate in one. I am continuously
on the lookout for new trials I could be
a part of as I enjoy all aspects of doing
clinical trials. I think it’s cool that I can
be a part of new medical findings.
RESEARCH ROUNDUP (continued from page 19)
Cystic Fibrosis (CF) and Modulators Based Therapy (CFTR)
In Oral And Salivary Perspectives: A Single Center Cross-
Sectional Study
https://tinyurl.com/3zxeyhbj
Imbalance in the oral environment due to course of CF
(comorbidities), behavioral (acidic diet, poor oral hygiene),
pharmacotherapeutic (hyposalivation, salivary composition)
factors need to be tackled with medical insights to take control of
destructive behaviours. The effects of reduced mucin levels after
CFTR modulator therapy should be interpreted as beneficial for oral
health.
Regardless of new modulator therapy in CF, the lack of proper oral
health care indicates the need for tailored interventions related to
oral health home care and nutrition counseling.
Safety, Feasibility And Efficacy Of Exercise As An Airway
Clearance Technique In Cystic Fibrosis: A Randomised
Pilot Feasibility Trial
https://tinyurl.com/4tjyv5fv
The objective of this trial was to test the feasibility and safety of
exercise as an airway clearance technique (ExACT) for pwCF versus
usual care. Testing of the primary hypothesis within a feasibility trial
showed ExACT to be a safe, acceptable and feasible intervention for
pwCF. These data support advancement to a definitive, longer-term,
multisite trial evaluating the safety, efficacy and cost-effectiveness
of ExACT, following minor refinement.
The Impact of Azithromycin on Lung Function in Children
And Adolescents with Cystic Fibrosis: A Systematic
Review And Meta-Analysis
https://tinyurl.com/5auxbj6u
This study aims to evaluate the effects of azithromycin on lung
function in children with CF through a systematic review and meta-
analysis of randomized controlled trials (RCTs). The study primarily
focuses on its impact on FEV1, FVC, and the progression of lung
function decline. Azithromycin shows potential in improving FEV1
and slowing lung function decline in children with cystic fibrosis,
likely through its anti-inflammatory and immunomodulatory effects.
Further large-scale studies are warranted to confirm its long-
term efficacy, evaluate safety, and optimize treatment strategies,
including potential combination therapies.
Mental Health And Transplantation In Cystic Fibrosis
https://tinyurl.com/zkzejtha
People with CF and their caregivers may face the prospect of lung
or liver transplantation as CF progresses. Despite the links between
psychological distress, poor adherence and survival outcomes, their
mental health needs may not be consistently addressed. These
researchers conducted a narrative review of mental health aspects
of transplantation in PWCF, including health-related quality of life
(HRQoL), pre-transplant psychosocial evaluation, neuropsychiatric
complications, and psychosocial and psychopharmacologic
interventions. As CF progresses, patients and caregivers require
preparation for the psychosocial aspects of transplant evaluation,
 Research Roundup continued on page 27
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