Pulmonary Fibrosis Foundation Enrolls 1st Person in PFF Patient Registry, a Research Tool

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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PFF Patient Registry

The Pulmonary Fibrosis Foundation (PFF) announced it has enrolled its first pulmonary fibrosis (PF) patient in the newly launched PFF Patient Registry, a collaborative effort involving patients, researchers, and healthcare providers that will gather data to advance PF research and improve patients’ quality of life. Enrollment takes place at participating PFF Care Center Network (CCN) sites across the U.S.

PFF also announced that, on April 13 from 11 a.m. to 12 p.m CT, it will host a web seminar — “Update on Research in Pulmonary Fibrosis and the PFF Patient Registry and the PFF Care Center Network” — to address the diverse ways in which PFF and the PF community are furthering work on disease causes and new therapies. More information about the webinar, including registration, can be found at pulmonaryfibrosis.org/webinars.

“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,” Patti Tuomey, EdD, PFF president and chief executive officer, said in a news release. “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.”

The PFF Patient Registry collects medical data on PF patients being treated at any of the 40 CCN sites across the country,  including clinical care, computed tomography (CT) imaging files, and patient responses to questionnaires about disease symptoms and the illness’ impact on their lives. Patients may also agree to provide blood samples to be stored in a central biorepository.

Data and samples are collected in a consistent manner from each site, combined, and made anonymous and available to PF researchers to better understand the disease and develop more effective care strategies and therapies.

“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.”

Funding for the PFF Patient Registry was provided by Genentech, Boehringer Ingelheim, the Chicago Community Trust, the Rattner Family Foundation, the McQuaid Family Foundation, and Biogen.

“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 respiratory disease that causes scars to form in lung tissues, leading to serious breathing problems. Scar formation results from the accumulation of excess fibrous connective tissue, with a subsequent thickening of the lung walls, causing a reduced oxygen supply in the blood and shortness of breath.