three-people-speaking-together

PFF Help Center

For those living with pulmonary fibrosis, obtaining the most accurate and current information can be a challenging and frustrating task. Let us help you find your answers.

The PFF Community Registry: Open for enrollment!

The Pulmonary Fibrosis Foundation is leading the fight by funding promising research and we need your help. 

One of our key research programs is the PFF Community Registry. We invite eligible participants to join by completing a series of simple surveys. Your survey responses will be used by researchers to better understand how PF and ILD progress over time, respond to treatments, and how the diseases affect individuals. The more individuals who join and provide responses, the closer we come to a cure.

Eligible participants include:

  • Patients living with PF and ILD
  • Lung transplant recipients who have had PF or ILD
  • Caregivers and biological family members of patients with PF or ILD, including those who have passed away

Enrolling in the PFF Community Registry is entirely online. All you need is internet access. Learn more about this groundbreaking program by visiting the PFF Community Registry homepage

Have you already enrolled? If so, you can log in to access your account.

map showing people all over the United States

Be part of
something special

Find an event and connect with others in the PF community. 

+ View All Events
  • May
    01
    2024

    Wellspan Health-York Hospital Pulmonary Fibrosis Support Group

    Join the Wellspan Health-York Hospital Pulmonary Fibrosis Support Group monthly virtual meeting.

    5:00 PM - 6:00 PM EST
    View Full Details
  • May
    02
    2024

    Madison Pulmonary Fibrosis Support Group/UW Health PF Support Group

    Join the UW Madison PF Support Group.

    9:00 AM - 10:30 AM CST
    View Full Details
  • May
    02
    2024

    Geisinger Medical Center - Danville Pulmonary Fibrosis Support Group

    Join the Geisinger Medical Center - Danville Pulmonary Fibrosis Support Group monthly virtual meeting.

    2:30 PM - 3:30 PM EST
    View Full Details
doctor-and-patient-speaking-in-an-office

Clinical Trials

Pulmonary fibrosis patients may find several advantages to joining a clinical trial. Participants may obtain access to a potential new PF medication and receive valuable education about improving their health.

Get involved with the PFF Walk

Join us this year as we walk together toward a cure in Pittsburgh, the NYC Metro area, the San Francisco Bay Area, Chicago, Washington D.C., Dallas, and virtually on National Walk Day!

two-women-at-walk

The Latest News for the PF Community

Explore press releases and articles of interest to PF patients, caregivers and medical professionals.

Read more news   →

First Patient Enrolls In PRECISIONS Study For Treatment Of Idiopathic Pulmonary Fibrosis

NEWS RELEASE                                                        Contact: Dorothy Coyle 
FOR IMMEDIATE RELEASE                                      dorothyccoyle@gmail.com
                                                                                     773-332-6201
                    

researcher-holding-test-tube-biosamples

(CHICAGO) January 11, 2021 – Today, the Pulmonary Fibrosis Foundation (PFF) announced enrollment of the first patient in PRECISIONS (Prospective tReatment EffiCacy in IPF uSIng genOtype for Nac Selection) clinical trial. This is the first clinical trial to apply the principles of precision medicine to the treatment of patients with idiopathic pulmonary fibrosis (IPF). The trial aims to determine if N-Acetyl-cysteine (NAC) is an effective treatment in a subset of IPF patients who carry a particular genetic variant. 

The study is designed as a double-blind, multi-center, randomized, placebo-controlled trial investigating the safety and efficacy of NAC in patients with IPF who have the TOLLIP rs3750920 T/T genotype, which is present in 25% of IPF patients. The trial will enroll 200 patients from approximately 20 PFF Care Center Network (CCN) sites. Initial recruitment into the study is being facilitated by looking at phenotypic data from patients that are enrolled in the PFF Registry. 

“COVID-19 presented numerous obstacles over the past several months, including acquiring the study drug from Lombardi, Italy. Thanks to the herculean efforts of the primary investigators and site coordinators in the PFF Care Center Network, and most importantly, our patient volunteers, enrollment is now underway,” said Dr. Fernando Martinez, principal investigator for PRECISIONS. 

The first patient was enrolled at the University of Michigan. “IPF is a devastating disease, and we are proud to play a role in this study that we hope will lead to additional treatments for our patients who urgently need them,” said Dr. Elizabeth Belloli, principal investigator at the University of Michigan. 

Dr. Kevin Flaherty, Chair, PFF Registry and CCN Steering Committee, stated “This achievement is the result of a tireless team of investigators and study coordinators working in unison under the extreme conditions of the pandemic. In addition to the clinical trial, additional aims in the PRECISIONS study seek to identify the genetic variants of IPF and other interstitial lung diseases in order to distinguish individual diseases and predict disease course.”

This research is being supported by NHLBI grant number HL145266.

About the Pulmonary Fibrosis Foundation

The Pulmonary Fibrosis Foundation (PFF) mobilizes people and resources to provide access to high-quality care and leads research for a cure so people with pulmonary fibrosis will live longer, healthier lives. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. The PFF has a four-star rating from Charity Navigator and is a Better Business Bureau and National Health Council accredited charity.  For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S. 

Educational Materials

Find reliable information and trusted resources that can help you learn about pulmonary fibrosis and live better with PF.

+ VIEW ALL RESOURCES

  • About the PFF

    Read our brochure for a snapshot overview of the Pulmonary Fibrosis Foundation.
    View Full Details
  • Pulmonary Fibrosis Information Guide

    Our comprehensive guide provides reliable information about pulmonary fibrosis, the diagnostic process, treatment options, and more.
    View Full Details
  • Oxygen Basics Booklet

    This booklet provides an in-depth overview of the the basics of supplemental oxygen, including equipment, getting started, Medicare information, and traveling.
    View Full Details