Aug 14, 2014, 15:16 PM


Media Contact:
Michelle Michael
VP, Marketing & Communications



New data will be reported to FDA at patient-focused drug development meeting on 9/26; insights will help future PFF programs and services

CHICAGO, August 14, 2014/PR Newswire/-- The Pulmonary Fibrosis Foundation (PFF) today announced that it has funded a survey designed to collect patient insights, which will help inform decision makers with a better understanding of pulmonary fibrosis (PF). The information collected will provide a better understanding of patients’ and caregivers’ feelings about living with PF, their attitudes toward new treatments, and their opinions about research efforts.

"While we daily work with patients and families, they are rarely asked these types of questions in aggregate," PFF Chief Medical Officer Gregory Cosgrove, MD, said. "This survey presents a unique opportunity for patients and caregivers to share their experiences and be active participants in the future direction of the PFF and in the future direction of PF research.”

PFF Medical staff, in consultation with nationally recognized PF thought leaders and former employees of the Food & Drug Administration (FDA), developed this patient survey. The survey is wholly funded by the PFF and is being administered by Michaels Opinion Research, a third-party, independent research firm based in New York City.

Patients who currently have PF or caregivers taking care of someone with PF can participate. The survey can be found at the PFF’s homepage at www.pulmonaryfibrosis.org or by following the link www.adgsurveys.com:8080/f/331806/34fb/.

A report of the interim findings will be presented by the PFF to the FDA as part of the Patient-Focused Drug Development Meeting (PFDDM) to be held in Silver Spring, Maryland on September 26, 2014 from 1:00-5:00 PM EDT. The PF community has long advocated for such a forum. This is a new FDA initiative designed to receive feedback directly from patients and families in order to obtain a better understanding of how patients and caregivers cope with the disease.  This information will impact how the FDA conducts clinical trials and evaluates future treatments for PF.

This meeting is being conducted to fulfill FDA performance commitments that are required by the Congressional re-authorization of the Prescription Drug User Fee Act (PDUFA). Specific questions that were requested by the FDA regarding treatments and clinical trials are included in the PFF survey. Additional information concerning the FDA meeting can be found at: https://www.eventbrite.com/e/public-meeting-on-idiopathic-pulmonary-fibrosis-patient-focused-drug-development-registration-11505211397?aff=es2&rank=1.

"It is essential for the PFF to actively engage the FDA because of our mutual commitment to ultimately curing this disease. The PFDDM is a landmark first step in this collaboration. As the trusted resource for the PF community, it makes perfect sense that we assist this effort by reaching out to patients and caregivers and providing timely, insightful feedback through this independent survey,” said Patti Tuomey, EdD, President and Chief Operating Officer of the PFF. “This information will also help paint a very detailed portrait of our patients’ and caregivers’ opinions and will provide critical input for the future direction of all of the PFF programs and services."

The survey will remain open until 2,000 surveys are completed. A complete, aggregate report of the findings is expected to be available in the first quarter of 2015. Individual respondents' information will be kept strictly confidential in accordance the PFF’s Privacy Policy.

To learn more about the PFF or to participate in this survey, please visit www.adgsurveys.com:8080/f/331806/34fb/ or call the PFF Patient Communication Center at 844.TalkPFF (844.825.5733) or email: pcc@pulmonaryfibrosis.org.

About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to serve as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, and funding research. The PFF collaborates with physicians, organizations, patients, and caregivers worldwide. PFF Summit 2015: From Bench to Bedside, the PFF’s third biennial international health care conference, will be held November 12-14, 2015 in Washington, DC. For more information visit www.pulmonaryfibrosis.org or call 888.733.6741 or +1 312.587.9272 from outside of the US.

About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. IPF affects between 132,000-200,000 people in the United States (US), and between 37,000-40,000 people in the European Union (EU). The annual mortality is estimated to be 40,000 in the US, with an average survival of 2–3 years following diagnosis. There is no cure for IPF. There is presently no FDA-approved treatment for IPF in the US and limited therapeutic options available for individuals with mild-to-moderate IPF in the EU, Canada, and Asia.

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