(CHICAGO) April 3, 2023 — The Pulmonary Fibrosis Foundation (PFF) announces that April is PFF Community Registry Recruitment Month with activities including an educational webinar, social media content, and a journal club discussion for healthcare providers in the PFF Care Center Network (CCN). The recruitment month is focused on driving participation in the PFF Community Registry, which relies on self-reported information from patients and lung transplant recipients who have been diagnosed pulmonary fibrosis or interstitial lung disease (ILD), as well as their caregivers and biological family members including those who have lost a loved one.
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 lung. 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.
“While we have made many strides in research over the past two decades, there is still so much to learn about PF,” and said Kevin Flaherty, MD, MS, Chair of the PFF Registry Steering Committee. “The PFF Community Registry is a way for anyone affected by PF to be a part of the solution so that we can help those living with the disease, and hopefully, find a cure in the future.”
Since its launch in July 2022, more than 1,200 individuals have joined the PFF Community Registry. Participants are asked to complete just two online surveys each year, from the comfort of home and at their own pace. Surveys include simple questions about participants’ background and experiences, including demographics, diagnosis, education and employment, environmental exposures, and more. This information will help researchers address various issues in PF to improve diagnosis, care, and outcomes in the patients, caregivers, and family members.
“We encourage anyone affected by PF to help us grow the Community Registry by joining and spreading the word to others,” said Flaherty. “There are no limits on how large the Community Registry can grow. We need a wide range of voices from all different diagnoses, regions, races, ethnicities and ages to provide a clear picture of this disease for researchers and increase our chances of finding answers about PF and ILD.”
Sam Kirton, a PF lung transplant recipient and PFF Community Registry participant, stated: “One of the first things I considered after the day I was diagnosed was, how do I help? What can I do? The ultimate solution is a more effective therapy and a cure for pulmonary fibrosis. That's what the PFF Community Registry has the potential to enable.”
PFF Community Registry Recruitment Month will include communications to mobilize those in the PF community to share information and recruit peers, patients, friends, and family members. A Registry-focused webinar will take place on April 26 to provide insights on recent research and information on participation in the Community Registry. April’s PFF CCN Journal Club will convene PF-focused physicians and allied health professionals for discussion of the recent study, “PM2.5 and constituent component impacts on global DNA methylation in patients with idiopathic pulmonary fibrosis,” by Gillian Goobie, MD.
Recruitment month outreach also will encourage those already enrolled in the Registry to take their follow-up surveys, which are sent every six months. Ongoing participation will provide researchers with the most complete and robust data set for their investigations.
The PFF Community Registry is part of the PFF Registry program, which consists of two databases. In addition to the Community Registry, the PFF Patient Registry ran from 2016 to 2022 to track medical data from more than 2,000 PF patients across PFF Care Centers nationwide. Combined, the two databases offer a wealth of longitudinal data on all forms of PF, providing unparalleled insight into the health and health care of patients, lung transplant recipients, caregivers, and family members. These data are helping to accelerate PF research. Information from the PFF Patient Registry has already been used in over 40 studies representing more than $32 million in research.
"There are so many questions surrounding pulmonary fibrosis. And I want to be a part of the answer,” said Valeria Hatcher, a patient living with PF and PFF Community Registry participant.
PFF Community Registry Recruitment Month runs from April 1-30. To join the PFF Community Registry, sign up at pffregistry.org. To register for the educational webinar on April 26, click here.
The PFF Registry is supported by founding partner, Genentech, a member of the Roche Group, visionary partner United Therapeutics Corporation, sustaining partner Boehringer Ingelheim, and many generous donors. Each of these partners shares the belief that a comprehensive registry is fundamentally important to improving the lives of those living with PF.
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 three-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).
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