FOR IMMEDIATE RELEASE CONTACT: Dorothy Coyle
November 16, 2017 773-332-6201
EXPANDING CARE, RESEARCH AND TECHNOLOGY REPORTED AT PULMONARY FIBROSIS FOUNDATION CONFERENCE
Attendance Sets Record at International PFF Summit
CHICAGO – Physicians and researchers presented the latest scientific research into the numerous types of pulmonary fibrosis (PF), giving hope to nearly 900 patients, caregivers, and industry professionals at the Pulmonary Fibrosis Foundation’s (PFF) biennial PFF Summit last week in Nashville, Tenn.
The record attendance of 895 people at the PFF Summit reflected a 27 percent increase over 2015 Summit attendance. Members of the pulmonary fibrosis community from 46 states and 12 countries attended sessions on topics ranging from the role of genetics to the need for faster diagnosis of patients with the devastating lung disease.
Pulmonary fibrosis affects 200,000 Americans and causes more than 40,000 deaths annually. Fifty-thousand new cases are diagnosed each year. There is no known cure.
“Our patient community is willing to aid research by participating in studies and clinical trials,” said William T. Schmidt, President and CEO of the PFF. “The PFF Summit engaged patients, scientists, and physicians in the discussion of how we can collaborate to gain a better understanding of pulmonary fibrosis.”
The Summit’s scientific poster presentation featured 76 research projects. Academic posters were evaluated and the top six presented their research during sessions at the Summit. The winning poster, on single cell RNA-sequencing from IPF lungs, was presented by Taylor Adams of Yale University, School of Medicine.
Gregory P. Cosgrove, M.D., Chief Medical Officer of the PFF, reported on the expansion of the PFF’s Care Center Network (CCN), a group of 40 medical centers providing specialized staff and resources for PF patients. “The Care Centers are an opportunity to partner with the foundation and to partner with each other to move the care and understanding of pulmonary fibrosis forward,” said Dr. Cosgrove.
“As part of our quest to provide patients with access to care less than two hours from their homes, we will open an application cycle for new Care Center Network sites in January,” he said.
The PFF also announced that the first round of studies is underway using data from the PFF Patient Registry. There are now more than 1,500 patients enrolled toward the Registry’s goal of 2,000. Research topics include patient characteristics in the use of anti-fibrotic medications and confidence in diagnosis, how the distance patients live from CCN sites affects diagnosis and care, prognostic biomarkers in biorepository samples, and more. Registry research proposals are reviewed three times a year and the next window for submissions will be in January 2018.
A new partnership with monARC Bionetworks (monARC), a digital research company committed to accelerating pulmonary fibrosis research, was also announced. The PFF and monARC launched the beta version of a mobile app, PF Health, to accelerate clinical trials and research for pulmonary fibrosis by making it simpler for patients to share their health data with researchers anytime, anywhere. In addition, the PF Health app will provide access to the Foundation’s information and trusted educational materials. PF Health is available on the iTunes App Store.
The PFF Summit 2017 was sponsored in part by Boehringer Ingelheim, Genentech, FibroGen, Veractye, and The Pete DeVito Memorial Foundation. The PFF also acknowledged support from the PFF Summit Circle Supporters, Hales Family Foundation, and the Chuck and Monica McQuaid Family Foundation.
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, patients, and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-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 of the U.S.