FOR BREAKING NEWS VISIT WWW.QNS.COM FEBRUARY 20, 2020 • WELLNESS • THE QUEENS COURIER 41
wellness
Patient registry breathes new life
into pulmonary fi brosis research
Over 200,000 people in the United
States are living with pulmonary fi brosis
(PF), a progressive, debilitating lung disease.
More than 50,000 new cases of PF
are diagnosed each year - with many more
that are likely misdiagnosed or undiagnosed.
Most cases are idiopathic pulmonary
fi brosis (IPF), meaning of unknown
cause. And sadly, today the disease has no
known cure.
However, the Pulmonary Fibrosis
Foundation (PFF) is aggressively working
to solve the mysteries of PF. Th e new
PFF Patient Registry is now linking PF
patients nationally to provide researchers
with instantly accessible data, and there is
new hope on the horizon.
What is pulmonary fi brosis?
PF causes progressive scarring in the
lungs that destroys the normal lung,
making it hard for oxygen to get into
the bloodstream. Common symptoms
include a persistent dry cough, shortness
of breath and feeling run-down. People
with certain autoimmune diseases, a family
history of interstitial lung disease and
environmental exposures may develop PF.
Risk factors for IPF include a history of
smoking and an age of 60 years or more.
To facilitate a clear diagnosis, physicians
must perform a thorough physical exam,
as well as further testing such as a pulmonary
function test and/or high-resolution
CT (HRCT) scans.
Recognizing the symptoms and risk factors
are important to ensure an early diagnosis
to maximize treatment options.
“An overall lack of awareness of PF
means that research has been fairly limited,
but we’re working to change that
- by directly funding research, promoting
advocacy eff orts, encouraging collaborative
relations between industry and
academic researchers, and developing
solutions to bridge existing gaps in PF
research,” said Dr. Gregory P. Cosgrove,
chief medical offi cer of the PFF. “Because
this is still a little-known disease, many
patients have never even heard of it until
their diagnosis, but we are very encouraged
by the research in progress with the
registry data and we will continue to push
for more.”
Leading research with
a patient registry
In 2016, the Pulmonary Fibrosis
Foundation introduced its PFF Patient
Registry to drive PF research to better
understand the causes, improve treatments
and speed the path to clinical trials
by creating a pool of patients who choose
to participate. More than 2,000 people
living with PF have shared their detailed
medical information with the registry,
and scientists are using that data in their
quest for a cure.
Th e registry contains information about
each person’s diagnosis, symptoms, medical
test results, medications used to treat
PF and information about how people are
doing years aft er enrolling. It also includes
HRCT scans and a central biorepository
with blood samples from patients,
enabling researchers to examine the relationship
between biomarkers and clinical
data over time. Th e information is always
de-identifi ed, which means that researchers
who use it can never learn whose medical
data it is.
More than 23 studies have already been
conducted or are underway.
“PF clinicians, scientifi c leaders and
the patient community asked for a better
patient resource to support research
eff orts, and the Patient Registry is already
delivering results beyond our expectations,”
said William T. Schmidt, president
and CEO of the PFF. “Interest in the data
has been very strong and we look forward
to future results, which we hope will lead
to faster diagnosis, better treatments and,
eventually, a cure.”
To learn more, visit AboutPF.org.
— Courtesy of BPT
/WWW.QNS.COM
/AboutPF.org
