Apr 7, 2016, 10:02 AM

For Media Inquiries:
Michelle Michael Vice President, Marketing and Communications

The PFF Patient Registry is a research tool collecting data from people with pulmonary fibrosis

Chicago, April 7, 2016 – The Pulmonary Fibrosis Foundation (PFF), the leading pulmonary fibrosis (PF) resource for patients, their families as well as for the medical community, announced the launch of the PFF Patient Registry, the Foundation’s first comprehensive collection of data from pulmonary fibrosis patients across the country, with the first patient enrolling last week. Patient enrollment takes place at participating PFF Care Center Network (CCN) sites, a national network of 40 sites in 27 states across the country.

“The PFF Patient Registry is an important research tool that will help us unlock the mysteries of this devastating and fatal disease. People with nearly all types of PF will be able to participate, and in a secure, confidential manner,” said Patti Tuomey, EdD, president and chief executive officer of the PFF. “The Foundation is so grateful to the medical teams at the PFF Care Center Network sites who are enrolling patients, and especially to patients who are participating and all of the families, friends and donors who are endorsing this Registry.”

Announced in 2013, the CCN is comprised of medical centers across the country, using a multidisciplinary, collaborative approach to deliver comprehensive care to people living with PF, while offering access to important support services for patients and their families.

The PFF Patient Registry will permit researchers, through the generous contribution of medical data by patients, to gain a better understanding of how different forms of PF progress, who is affected by PF and how patients respond to different treatments. Patients participating in the PFF Patient Registry will do so through their regularly scheduled medical appointments. The Registry includes a biorepository, where patients can elect to also donate blood samples. Data from the Registry will help inform best practices in care and identify potential treatment targets. The Registry will also create a potential pool of patients who are available to participate in clinical trials.

Further, data, CT images and biosamples provided will be used by researchers to learn more about the causes of PF, find methods to make faster diagnoses, identify better treatments and discover which treatments are best for which patients.

“Information collected through the PFF Patient Registry will help facilitate ongoing research necessary to better understand how we can help people living with multiple types of pulmonary fibrosis, including other diseases that often include PF, such as rheumatoid-arthritis associated pulmonary fibrosis,” said Kevin Flaherty, MD, MS, Steering Committee Chairman, PFF Care Center Network and PFF Patient Registry. “This project provides an incredible opportunity to advance progress toward a cure for pulmonary fibrosis.”

The PFF will host a webinar, “Update on Research in Pulmonary Fibrosis and the PFF Patient Registry and the PFF Care Center Network,” on April 13, 11 a.m. – 12 p.m. Central time. This webinar will address the different ways that the PF community and the PFF are working to discover the causes of PF and find new treatments. Hear both the medical and patient perspectives on the future of research in PF. PFF Chief Medical Officer, Gregory P. Cosgrove, MD; Steering Committee Chairman, PFF Care Center Network and PFF Patient Registry, Kevin R. Flaherty, MD, MS; and PFF Senior Medical Advisor David J. Lederer, MD, MS will present. To register for this PFF webinar and to submit questions for discussion please visit pulmonaryfibrosis.org/webinars.

Funding from founding partner Genentech and visionary partner Boehringer Ingelheim, as well as from the Chicago Community Trust, the Rattner Family Foundation, the McQuaid Family Foundation, and Biogen helped the PFF establish the PFF Patient Registry. Further donations will provide expansion opportunities that will enhance this research tool.

“The generous investments funders have made to date have allowed us to establish the PFF Patient Registry and enroll the first of at least 2,000 patients,” Tuomey said. “Further funding will be important in order for us to fully realize research opportunities through Registry data.”

PF is a devastating group of relentlessly progressive diseases, with no known cure. The fight for improved treatments and an eventual cure for pulmonary fibrosis is a long one, and it will take future partnerships and ongoing donor support to succeed.

For more information about the PFF Care Center Network and the PFF Patient Registry or to make a donation, please visit pulmonaryfibrosis.org.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which, over a period of time, lung tissue becomes thickened, stiff and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and grows thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive enough oxygen. In some cases, doctors can determine the cause of the fibrosis, but in many cases, there is no known cause. When the cause of the fibrosis is unknown (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. There is no cure for IPF. Presently, there are two FDA-approved treatments for IPF in the U.S.

About the Pulmonary Fibrosis Foundation
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 collaborates with physicians, organizations, people with PF and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity. The PFF Summit 2017: From Bench to Bedside, its fourth biennial international health care conference, will be held in November 2017. For more information visit pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or +1 312.587.9272 from outside of the U.S.

# # #

Download PDF
footer_txt_bblBook a PFF Ambassador for your event.   Call 844.TalkPFF >