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PULMONARY FIBROSIS FOUNDATION’S PATIENT REGISTRY
REACHES TARGET ENROLLMENT
REGISTRY PROVIDES REAL WORLD PATIENT DATA TO AID RESEARCHERS
CHICAGO, July 31, 2018 – The Pulmonary Fibrosis Foundation (PFF) announced that it has achieved its enrollment goal for the initial phase of the PFF Patient Registry with participation of 2,002 patients. The Registry, launched in 2016, is a collection of comprehensive anonymized data from patients living with pulmonary fibrosis (PF), a group of fatal lung diseases which cause progressive scarring in the lungs.
“The PFF Patient Registry is a major resource designed to accelerate progress in pulmonary fibrosis research and in understanding the causes of PF,” said Dr. Kevin R. Flaherty, Steering Committee Chair of the PFF Patient Registry and PFF Care Center Network. “Since the Registry launched, we’ve seen a tremendous response from the research community and are eager to assist them in answering key questions about this disease.”
The PFF invites investigators to submit proposals to access the data to better understand the causes of PF, improve the way doctors diagnose and care for people living with PF, and discover new treatments. The PFF accepts and reviews ancillary research proposals three times a year. Details are available at pffpatientregistry.org.
“The Registry is an example of a critical open-access resource containing phenotypic clinical data and biospecimens that can be leveraged by investigators to enhance recruitment and retention of patients for clinical trials, as well as support ancillary or independent mechanistic studies to better understand the etiology of pulmonary fibrosis,” said Dr. James P. Kiley, Director of the Division of Lung Diseases at the National Heart, Lung, and Blood Institute.
The Registry may also speed the path to completion of clinical trials by creating a pool of patients who are interested in participating.
Patients participating in the Registry have enrolled through the sites that comprise the PFF’s nationwide Care Center Network and are monitored through their regularly scheduled medical appointments. The Registry includes information about the patient’s age and gender, details on how the diagnosis was made, symptoms, test results, medications, and medical outcomes. It also includes high resolution CT scans and a biorepository of patient blood samples.
“We are proud to support the PFF Patient Registry to help advance science and have a positive impact on the pulmonary fibrosis community,” said Dr. Ben Kramer, vice president for U.S.
Medical Affairs at Genentech, one of the Registry’s founding partners. “This significant enrollment milestone underscores patients’ dedication to supporting research as scientists strive to better understand pulmonary fibrosis.”
Over time and with additional funding, the PFF aims to enroll additional patients and expand the sources of data gathered for the Registry.
In addition to Genentech, a member of the Roche Group, the first phase of the PFF Patient Registry was funded through the support of corporations, foundations, and individuals who have been impacted by PF. Each of these donors shares in the belief that a comprehensive registry is fundamentally important to improving the lives of those living with the disease.
The Pulmonary Fibrosis Foundation (PFF) 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 collaborates with physicians, organizations, patients, and caregivers worldwide. The PFF has a three-star rating from Charity Navigator and is a Better Business Bureau accredited charity. For more information, visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or 312.587.9272 from outside the U.S.