The Pulmonary Fibrosis Foundation (PFF) is commemorating the one-year anniversary of the PFF Community Registry, a groundbreaking research initiative that has successfully gathered a wealth of data on pulmonary fibrosis (PF) and interstitial lung disease (ILD). With more than 1,600 participants, the Community Registry has become a valuable resource for researchers and medical professionals seeking to deepen their understanding of PF and ILD.
“The Community Registry is now reaching a critical mass, so that we can offer researchers more information to help further their understanding of PF,” stated Dr. Joseph Lasky, Chief Medical Officer for the PFF. “Thanks to our participants, this invaluable resource has the potential to drive significant advancements in the diagnosis, treatment, and management of this complex disease."
The Community Registry is a comprehensive database that relies on the collection of self-reported data through online surveys conducted every six months. It encompasses a diverse group of participants, including individuals who have been diagnosed with PF or ILD, including those who have had a lung transplant, as well as caregivers and biological family members of those with PF or ILD.
“There is no limit on the number of individuals who can join the Community Registry, and we are focused on growing it exponentially to reflect the significant population impacted by the disease,” said Lasky. “Our goal is to increase diversity and ongoing engagement within the Registry, so that the data collected demonstrates the intricate nature of pulmonary fibrosis and can be utilized to improve outcomes for all patients.” The Registry also allows the PFF to contact patients to refine information regarding new specific questions that arise, and to keep pace with patient experiences with care delivery.
“When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2011, there wasn’t any medication available specific to my condition,” said Karen Smoot, a participant in the Community Registry. “The research from the Registry will aid pulmonologists to improve how patients are diagnosed and treated, and ultimately, improve health-span and save lives.”
The data collected through the Community Registry serves as a valuable complement to the information gathered by the PFF Patient Registry, which began in 2016 and includes patient data provided by clinicians. Together, data from the Community Registry and Patient Registry provide a comprehensive and multifaceted perspective on PF.
To learn more about the PFF Community Registry, visit pffregistry.org.
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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).