CHICAGO, May 20, 2024
/PRNewswire/ -- Achieving a significant milestone, the Pulmonary
Fibrosis Foundation (PFF) Community Registry has reached 2,000
participants and counting, providing researchers with important
data on pulmonary fibrosis (PF) and interstitial lung disease (ILD)
from patients, lung-transplant recipients, caregivers and family
members of those with PF. The PFF Community Registry was launched
in July 2022 with the goal of driving
more research and discoveries to better diagnose, treat, and
eventually cure PF, and currently includes participants from all 50
States. The PFF Community Registry allows those affected by PF to
work together in this quest for a cure.
PF is a progressive, debilitating disease that causes scarring
in the lungs and is part of a larger group of more than 200 ILDs,
which are characterized by inflammation and/or scarring in the
lungs. PF and ILDs impact over 250,000 Americans, and there are
approximately 50,000 individuals who are newly diagnosed each year.
There currently is no cure for PF and ILD and both are on the rise
nationally.
"Reaching the 2,000-participant landmark is very exciting for
researchers, and indicative of the passion of those in the entire
PF community," said Kevin Flaherty,
MD, MS, Chair of the PFF Registry Steering Committee. "Thanks to
all those who have joined the Community Registry, we are gathering
essential data that will help us not only understand the impact of
these diseases but will also help us develop better therapies."
Surpassing the 2,000-participant milestone during Registry
Recruitment Week in April, the PFF remains steadfast in encouraging
all eligible participants to share their unique experiences with
researchers.
"What I would want researchers to know about my story is that I
was suffering with the disease for several years before I was
finally diagnosed in 2011," remarked Alejandro Puebla, lung-transplant recipient and
Community Registry participant. "I want people who are diagnosed
with PF to have access to better treatments so they can live long
and prosperous lives."
The first of its kind to include caregiver and family member
data, the Community Registry values diverse perspectives on the
impact of PF across families to drive crucial PF research for
present and future generations.
"As a young researcher, I deeply appreciate the participation of
patients and their families," said John
Kim, MD, MS, Columbia
University. "With no limit on enrollment, every new
participant in this Registry will provide deeper insights that can
help answer the many urgent questions that still remain about PF
and ILD."
The PFF Community Registry is one arm of the PFF Registry,
complementing the PFF Patient Registry, which features
physician-reported clinical data about patients. Combined, the two
arms of the PFF Registry provide a wealth of data that is available
for use by academic and industry experts. Together, the Community
and Patient Registries serve as resources to stimulate research and
assist in clinical trial recruitment. For questions about
submitting a study proposal, email
registry@pulmonaryfibrosis.org.
To learn more about the Registry or to get involved, please
visit pulmonaryfibrosis.org/pff-registry/.
About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation is to
accelerate the development of new treatments and ultimately a cure
for pulmonary fibrosis. Until this goal is achieved, the PFF is
committed to advancing improved care of patients with PF and
providing unequaled support and education resources for patients,
caregivers, family members, and health care providers. The PFF has
a four-star rating from Charity Navigator and is an accredited
charity by the Better Business Bureau (BBB) Wise Giving Alliance.
The Foundation has met all of the requirements of the National
Health Council Standards of Excellence Certification Program® and
has earned the Guidestar Platinum Seal of Transparency. For more
information, visit pulmonaryfibrosis.org or call 844.TalkPFF
(844.825.5733)
Contact: Dorothy
Coyle, Pulmonary Fibrosis Foundation, 773-332-6201
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SOURCE The Pulmonary Fibrosis Foundation