Pulmonary Fibrosis Foundation Introduces Community Registry for Self-Reported Data

Jul 18, 2022 at 01:23 pm by pj


Participation Will Accelerate Medical Research Surrounding Life-Threatening Lung Disease


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


More than 250,000 Americans are living with PF and interstitial lung disease (ILD). These disorders are characterized by varied amounts of inflammation and/or scarring that damage the ability of the lung to absorb oxygen from the air. Pulmonary fibrosis means scarring of the lung and can be seen in many types of ILD.


The PFF Community Registry will complement the PFF Patient Registry, established in 2016 to track medical data from more than 2,000 PF patients across PFF Care Centers nationwide. To date, the information collected by the PFF Patient Registry has aided clinical and translational research investigators to successfully conduct numerous studies and continues to be available to researchers for new analyses. In the future, researchers will be able to access even more information from both registries to evaluate contributing factors, treatment outcomes, and relevant data to make further advances in understanding PF.


“We are inviting people affected by PF to help find answers for this debilitating disease by joining the PFF Community Registry,” said Junelle Speller, MBA, Vice President, PFF Registry. “Through the collaborative efforts of each participant, we can accelerate medical research and improve the lives of patients with PF.”


Joining the PFF Community Registry is easy and participation is voluntary. Information will be collected via online surveys, which can be completed at the individual’s own pace and in the comfort of their homes with minimal effort. The database is highly secure, using the same technology trusted by doctors’ offices, hospitals, and clinical trials worldwide.  Any data that directly identifies participants will be removed before information is shared with researchers.


“A powerful aspect of the Community registry is that we can use the information gained from it to understand the experience of individuals living with PF, and how it impacts their lives and those of their families and caregivers,” said Kevin Flaherty, MD, MS, Steering Committee Chair, PFF Registry. “Researchers can look at the data to better understand fibrotic lung diseases and learn about effective approaches to improve patient care.”


The PFF Registry offers a wealth of longitudinal data on all forms of PF, providing unparalleled insight into the experience of patients, lung transplant recipients, caregivers, and family members. Information from the PFF Patient Registry data have already been used in almost 40 studies representing more than $32 million in PF research on various topics including: characteristics of patients selected for transplants, outcome differences based on sex, race, or smoking status, characteristics associated with people using supplemental oxygen, and effects of anticoagulants on survival in patients with interstitial lung diseases.


“The simple act of promoting awareness of the PFF Registry among patients, family members, and caregivers will lead to increased participation and a greater probability of finding answers to key questions about PF,” said Speller. “There are no limits as to how large the Registry can grow, so it is imperative we reach everybody who may be affected by this disease.”


“We all want to find a cure, and that dream begins with us,” added Ken Vella, a patient with PF and member of the PFF Community Registry. “We know there is hope for future generations, but those aspirations can only be achieved through our participation.”


To join the PFF Community Registry, sign up at pffregistry.org. To learn about PF risk factors, symptoms, and more, please visit www.AboutPF.org.


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 shares the belief that a comprehensive registry is fundamentally important to improving the lives of those living with PF.


The Pulmonary Fibrosis Foundation 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 rates among top charities in the U.S. 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 Gold Seal of Transparency.

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