PFF In The Media

Pulmonary Fibrosis Patient Registry Data Reveal PF, ILD Outcome Variations

Recent studies based on data from the Pulmonary Fibrosis Foundation Patient Registry,1 presented at the American Thoracic Society (ATS) 2022 Conference, “provide important information on potential disparities and differences in the diagnosis, prognosis, and management of patients with pulmonary fibrosis or interstitial lung disease,” said Joyce S. Lee, MD, MS, lead author of 1 of those studies and the senior medical advisor for research and health care quality at the Pulmonary Fibrosis Foundation (PFF).

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Registry Launched to Reach More Patients With PF

The Pulmonary Fibrosis Foundation (PFF) has launched a new initiative in which they hope to capture a far more diverse representation of patients with pulmonary fibrosis (PF) than the current registry allows them to do, a press release from the PFF indicated.

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The Clinical Lab’s Role in Diagnosing Idiopathic Pulmonary Fibrosis

While the exact cause of idiopathic pulmonary fibrosis is not always known, clinicians have a wealth of diagnostic tools at their disposal to help identify the potential causes of the disease and, if it is indeed idiopathic pulmonary fibrosis, potential treatments to help manage it.

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Pulmonary Fibrosis Foundation launches community registry for self-reported data

The Pulmonary Fibrosis Foundation (PFF) has launched the PFF Community Registry, a separate data set of the PFF Registry™ that is provided directly by participants with pulmonary fibrosis (PF), their caregivers and family members. Will collect reported data. members, and lung transplant recipients previously diagnosed with PF.

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PFF Highlights Opportunities for Patients on Clinical Trials Day

May 20 is Clinical Trials Day, a time to recognize the importance of clinical research in advancing public access to innovative medicine and treatments to improve the lives of people worldwide. For the pulmonary fibrosis (PF) community, clinical trials offer answers to questions that could change the future of how PF is treated and help to someday find a cure.

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Pulmonary Fibrosis Foundation Expands Clinical Trial Resources for Patients

The Pulmonary Fibrosis Foundation (PFF), the nation’s leading pulmonary fibrosis research, education, and advocacy organization, has developed new materials and tools for people living with pulmonary fibrosis (PF) to learn about and enroll in clinical research studies. The Clinical Trials Guide for Patients provides comprehensive information on the types and phases of clinical trials, and how patients can participate.

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Pulmonary Fibrosis Foundation Research Explores Quality and Access to Patient Care

The Pulmonary Fibrosis Foundation (PFF), the nation’s leading pulmonary fibrosis research education and advocacy organization, announced research results from four studies examining access to care and outcomes for patients living with pulmonary fibrosis (PF) and interstitial lung disease (ILD).

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Jane Jackman shares what it's like living with pulmonary fibrosis | Community Voices

Jane Jackman is a Springfield resident with years of experience working in the medical field as a physician. She spoke to Community Voices about her diagnosis of idiopathic pulmonary fibrosis, which is a disease that causes scarring of the lungs making it increasingly difficult for patients to breath as the disease progresses. Fortunately Jackman received a much-needed lung transplant, and now she speaks on the need for more research and treatment of pulmonary fibrosis.

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BROADWAY BELTS FOR PFF! Gala Featuring Julie Halston, Telly Leung, Beth Leavel & More Raises Record $475,000

The Pulmonary Fibrosis Foundation's 12th annual Broadway Belts for PFF! raised a record $475,000 in a new hybrid format on April 29. The sold-out gala at New York City's Edison Ballroom, live streamed for the first time, is the single largest fundraiser in the Foundation's history.

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Broadway Belts for PFF! Raises Record $475,000

The Pulmonary Fibrosis Foundation’s (PFF) 12th annual Broadway Belts for PFF! raised a record $475,000 in a new hybrid format on April 29. The sold-out gala at New York City’s Edison Ballroom, live streamed for the first time, is the single largest fundraiser in the Foundation’s history.

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National Minority Health Month: Changing the Conversation Around Minority Health Research and Disparities

April is National Minority Health Month, a time to raise awareness about health disparities that continue to affect racial and ethnic minority populations. It is a time to encourage action through health education, early detection, and control of disease complications. One way to improve health outcomes for minority populations is through inclusion in research.

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Lillias White, Beth Leavel, Ann Harada, More Announced for 12th Annual Broadway Belts for PFF!

Tony recipient Julie Halston (Sex and the City, Gossip Girl, Tootsie) will emcee the 12th annual Broadway Belts for PFF!, a benefit to support the Pulmonary Fibrosis Foundation. The hybrid event will occur simultaneously in New York City's Edison Ballroom and online April 29.

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Beth Leavel, Lillias White, and More Announced for BROADWAY BELTS FOR PFF

Tony Award-winning actress and comedienne Julie Halston (Sex and the City, Gossip Girl, Tootsie) will emcee the 12th annual Broadway Belts for PFF!, an unforgettable evening of entertainment featuring some of Broadway's hottest stars. This year's hybrid event will take place live at New York City's Edison Ballroom and virtually on Friday evening, April 29, 2022. The event is the single largest fundraiser for the Pulmonary Fibrosis Foundation (PFF).

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Cough-Specific Quality of Life Predicts Disease Progression Among Patients With Interstitial Lung Disease

We analyzed data from the Pulmonary Fibrosis Foundation Registry, which comprises a multicenter population of well-characterized patients with ILD. We first examined associations between patient factors and baseline scores on the Leicester Cough Questionnaire (LCQ), a cough-specific QOL tool, using a proportional odds model. Next, we examined associations between baseline LCQ scores and patient-centered clinical outcomes, as well as pulmonary function parameters, using a univariable and multivariable proportional hazards model that was adjusted for clinically relevant variables, including measures of disease severity.

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Indoor Air Quality is Essential to Lung Health

Air quality may seem like something to consider only when you are venturing outdoors. However, indoor concentrations of some pollutants are often two to five times higher than typical outdoor concentrations, according to the Environmental Protection Agency (EPA).

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Listen: Her mom died of pulmonary fibrosis. Now, she’s asking for more research into the disease that scars your lungs.

In the latest installment of our occasional conversations with Fort Worth leaders, Arlington resident Stephanie Golden shares her family’s journey with pulmonary fibrosis — and why she’s asking Capitol Hill for more research into a cure.

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COVID-19 Guidance Often Neglects People With Rare Diseases

In mid-March 2020, with the agreement of my then-rheumatologist, I decided to leave New York City just as it became the epicenter of COVID-19. As someone who lives with vasculitis, I was afraid of how my body would react to the virus. Under my rheumatologist’s guidance, I needed to take an abundance of caution when it came to COVID-19.

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Pulmonary Fibrosis Foundation Marks Rare Disease Day Through Education and Awareness of Pulmonary Fibrosis

Today, 5% of the worldwide population is affected by rare diseases, translating to 300 million people*. Rare Disease Day on February 28 provides an opportunity to raise awareness for the more than 6,000 identified rare diseases, including pulmonary fibrosis (PF). As Chief Medical Officer of the Pulmonary Fibrosis Foundation (PFF), I’m here to mark the observance and highlight the need to increase public understanding of PF through disease education, research initiatives, and helpful resources for patients, caregivers, and providers.

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