The Open-Access Pulmonary Fibrosis Foundation Patient Registry

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The Pulmonary Fibrosis Foundation (PFF) 501(c)(3) non-profit organization, headquartered in Chicago, was founded in 2000 by Albert Rose and Michael Rosenzweig, and is dedicated to identifying effective pulmonary fibrosis treatments and mobilizing people and resources to provide access to high quality care. It 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.

The PFF has 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.

In addition to Genentech, a member of the Roche Group, one of the Registry’s founding partners, 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 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 Pulmonary Fibrosis Foundation’s Patient Registry Reaches Target Enrollment accepts and reviews ancillary research proposals three times a year. Details are available at pffpatientregistry.org.

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“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.

“We are proud to support the PFF Patient Registry to help advance science and have a positive impact on the pulmonary fibrosis community,” … “This significant enrollment milestone underscores patients’ dedication to supporting research as scientists strive to better understand pulmonary fibrosis.” – Dr. Ben Kramer, vice president for U.S. Medical Affairs at Genentech

 

Sources:

  1. https://www.prnewswire.com/news-releases/pulmonary-fibrosis-foundations-patient-registry-reaches-target-enrollment-300689339.html
  2. http://www.pulmonaryfibrosis.org/