Page 14 - CF Roundtable - Winter/Spring 2026

PEARLS OF WISDOM (continued from page 13)
compensation for trial participants—
and awareness of us as people with
full lives of our own that have value
and meaning—has increased as well
thanks to activism by patients and our
families. That doesn’t always mean
participating in a given trial would be
worth it with all factors considered.
But it creates a favorable landscape for
making those choices as empowered
consumers of our own health care.
So to the medical researchers reading
this, regardless of whether you have
CF yourselves: Keep innovating! The
more creativity and ingenuity you bring
to designing the patient participation
experience for drug and device trials,
the more you’ll welcome a diverse
group of participants who can help you
demonstrate the full potential of your
interventions. Don’t hesitate to get us
involved in the planning and to get our
honest input about potential barriers
and solutions, even if your funders
don’t require that sort of outreach.
These days you may well connect
with a few of us who work in different
areas of medical research ourselves
and can offer insight from multiple
perspectives!
And to all fellow adults with CF reading
this, whether you have any background
RESEARCH ROUNDUP (continued from page 5)
cellspecific therapeutic strategies to
combat Pseudomonas aeruginosa lung
infections.
Antibacterial Siderophores of
Pandoraea Pathogens and Their
Impact on the Diseased
Lung Microbiota
https://tinyurl.com/puts825z
Antibiotic-resistant bacteria of the genus
Pandoraea, frequently acquired from
the environment, are an emerging cause
of opportunistic respiratory infections,
especially in CF patients. However, their
specialized metabolites, including niche
and virulence factors, remained unknown.
Through genome mining of environmental
and clinical isolates of diverse Pandoraea
species, these researchers identified a
highly conserved biosynthesis gene cluster
(pan) that codes for a nonribosomal
peptide synthetase (NRPS) assembling a
new siderophore. Using bioinformatics-
guided metabolic profiling of wild type and
a targeted null mutant, they discovered the
corresponding metabolites, pandorabactin
A and B. Their structures and chelate
(gallium) complexes were elucidated by
a combination of chemical degradation,
derivatization, NMR, and MS analysis.
Metagenomics and bioinformatics of
sputum samples of CF patients indicated
that the presence of the pan gene locus
correlates with the prevalence of specific
bacteria in the lung microbiome. Bioassays
and mass spectrometry imaging showed
that pandorabactins have antibacterial
activities against various lung pathogens
(Pseudomonas, Mycobacterium, and
Stenotrophomonas) through depleting
iron in the competitors. Taken together,
these findings offer first insight into niche
factors of Pandoraea and indicate that
pandorabactins shape the diseased lung
microbiota through the competition for
iron.
Researchers Develop Wearable
Sensor To Help Diagnose Cystic
Fibrosis
https://tinyurl.com/hhdxfv2f
A group of US researchers has developed
a wearable device capable of accurately
tracking chloride ion levels in sweat,
which is essential for evaluating hydration
status and health conditions like cystic
fibrosis and more. This sensor will allow
for real-time tracking of an exercising
person’s sweat through a hydrogel-based
design that allows the device to operate
with enhanced sensitivity, accuracy and
efficiency, all while being reusable.
Symptom Factors And Their Clinical
Correlates Among Adults With Cystic
Fibrosis
https://tinyurl.com/3b349h7f
Despite CFTR modulator therapy that may
dramatically alter the course of disease,
many people living with CF experience
co-occurring symptoms that may be
interrelated and may synergistically
degrade quality of life. These researchers
sought to identify symptom factors,
or groups of correlated symptoms,
connected by underlying latent variable(s).
They then examined demographic and
clinical characteristics associated with
these groups among PwCF. Among
14 CF Roundtable Winter/Spring 2026
in medical research or not: Your
time is valuable, as is your comfort!
Living with CF and benefiting from
prior advancements in care does not
obligate you to put yourself in harmful
situations for the sake of contributing
data. I encourage knowing yourselves
and your worth—and trusting your own
judgment about whether to participate
in any clinical trials you get the
opportunity to join. The right research
opportunities for each of us are the
ones that work for our lives and allow
us to thrive in the process.
262 participants, median age was 33
years, and 78 % were prescribed a CFTR
modulator. Researchers identified three
symptom factors: respiratory-energy,
mood-gastrointestinal irritability, and pain-
gastrointestinal dysmotility. High symptom
severity in each factor was associated
with specific demographic and clinical
characteristics. CF symptom management
strategies have historically focused on
single-symptom approaches. Findings
from this study may prompt clinicians
to consider co-occurring symptoms, and
ensure their assessment and management
is tailored to the unique experiences of
PwCF.
Successful Pregnancy in a Patient
With Advanced Cystic Fibrosis
Lung Disease and Burkholderia
Cenocepacia Colonization
https://tinyurl.com/d4aemcmn
CF affects multiple aspects of health,
including reproduction and fertility. This
report details a case of a 38-year-old
woman with several complications from
her CF, including advanced CF lung disease,
pancreatic exocrine insufficiency, asthma,
and airway colonization with Burkholderia
cenocepacia, who became pregnant and
successfully delivered a baby boy without
significant complications. This was an
unplanned pregnancy 4 years after initiation
of elexaftor/tezacaftor/ivacaftor therapy, a
CF transmembrane conductance regulator
modulator therapy that has significantly
improved various health outcomes in
patient populations with CF, including the
reproductive health of women.
 Research Roundup continued on page 15