PFF In The Media

Using Self-Reported Patient Data to Advance Lung Disease Care

Junelle Speller, vice president of the Pulmonary Fibrosis Foundation (PFF) Registry, is one advocate for the use of self-reported patient data for advancing ILD and PF care. In July, the foundation launched the PFF Community Registry, a subset of its PFF Registry, focused on collecting data via online surveys of patients with PF or ILD, their caregivers and family members, and lung transplant recipients previously diagnosed with PF or ILD.

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Community Registry Grows Research Abilities Of Pulmonary Fibrosis Foundation

In July, the Pulmonary Fibrosis Foundation (PFF) launched the PFF Community Registry to begin collecting data directly from patients in the U.S. with pulmonary fibrosis (PF) and interstitial lung disease (ILD)—together with their nonprofessional caregivers and biological family members—as well as lung transplant recipients previously diagnosed with PF or ILD.

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Being Idiopathic: Solving the Mystery of My Diagnosis

I’ve spent much of my working life conducting investigations. As a special agent for the Air Force Office of Special Investigations and in a second career providing security and investigative services under contract to the federal government, the cases all had similar objectives.

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First-time Pulmonary Fibrosis walk planned in honor of Sand Springs man

A Sand Springs woman is hosting a Pulmonary Fibrosis awareness walk in September in honor of her late husband. Stephanie Hagar wears her husband Michael’s ashes and wedding ring around her neck and has a tattoo in his honor on her wrist.

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Keck Medicine’s Center for Advanced Lung Disease designated as pulmonary fibrosis care center

Keck Medicine of USC’s Center for Advanced Lung Disease has been designated as one of 74 sites included in the Pulmonary Fibrosis Foundation Care Center Network. These sites are recognized for their efforts in diagnosing, treating and providing support to those living with pulmonary fibrosis (PF), a life-threatening lung disease that currently has no cure.

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Pulmonary fibrosis patient makes every breath count

Forrest Reed always felt extremely healthy for a 70-year-old. He did not require any medications, his blood pressure was low and at his annual physical his doctor thought his lungs sounded fine. Then he mentioned a dry, recurring cough he had been experiencing for the past couple of months.

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Pulmonary Fibrosis Foundation’s latest registry offers research opportunities

The PFF Community Registry collects self-reported data from patients, nonprofessional caregivers and biological family members via a secure online portal. Participation is voluntary.

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Pulmonary Fibrosis Foundation’s latest registry offers research opportunities

The Pulmonary Fibrosis Foundation (PFF) has launched the PFF Community Registry to facilitate research on pulmonary fibrosis (PF) and interstitial lung disease (ILD). The PFF Community Registry collects self-reported data from patients, nonprofessional caregivers and biological family members via a secure online portal.

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Pulmonary fibrosis patient makes every breath count

Forrest Reed always felt extremely healthy for a 70-year-old. He did not require any medications, his blood pressure was low and at his annual physical his doctor thought his lungs sounded fine.

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OU Health joins Pulmonary Fibrosis network

Americans living with pulmonary fibrosis, a life-threatening lung disease, have gained access to specialized care through the Pulmonary Fibrosis Foundation’s Care Center Network, which recently announced that six new sites, including OU Health in Oklahoma City, have joined. The goal of the network is to help diagnose, treat, and provide support for more than 250,000 Americans living with pulmonary fibrosis.

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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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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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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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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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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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