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.

 

 

Cathie Spino ScD
We never forget that there is a real person behind every statistic in the PFF Patient Registry, and that knowledge drives us forward every day.

Cathie Spino, ScD
Director of Statistical Analysis of Biomedical and Educational Research (SABER) School of Public Health, University of Michigan

The PFF Registry is developed and managed by a dynamic team comprised of Medical Experts, PFF Staff, and a data coordinating center working in partnership with the Care Center Network of medical centers across the United States. Do we mention the BOD, MSAC, CCN-R Steering Committee? 

 

CARE CENTER NETWORK

The PFF Care Center Network (CCN)  forms the infrastructure of the PFF Registry’s clinical arm. Registry patients receive their care at a PFF Care Center so that trained coordinators oversee data collection to protect the Registry’s integrity.

The CCN is a growing group of medical centers that have the necessary resources and specialized staff to provide high-quality care to people with PF. Each Care Center is comprised of experts in pulmonary medicine, rheumatology, radiology, pathology, and nursing who specialize in interstitial lung disease.

 

DATA COORDINATING CENTER

The Registry is managed by the Data Coordinating Center at the Statistical Analysis of Biomedical and Educational Research  (SABER) at the University of Michigan. SABER provides the computer infrastructure and houses the Registry’s clinical database and biosamples. Additionally, SABER data scientists work with researchers to hone their ideas and verify that the Registry data can support the proposed study. Support from SABER data scientists continues throughout the research process, up to and including preparing manuscripts for publication.

 

PFF STAFF

William T. Schmidt, President and Chief Executive Officer

Scott Staszak, Chief Operating Officer

Laura Sadler, Chief Marketing Officer

Gregory P. Cosgrove, MD, Chief Medical Officer

Junelle Speller, Vice President, PFF Registry

Kevin R. Flaherty, MD, MS, Steering Committee Chair, PFF Care Center Network and PFF Registry

Amy Hajari Case, MD, FCCP, Senior Medical Advisor Education and Awareness

Sonye Danoff, MD, PhD, Senior Medical Advisor PFF Care Center Network

Joyce S. Lee, MD, MS, Senior Medical Advisor Research and Health Care Quality

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The Pulmonary Fibrosis Foundation is proud to serve as the leading patient advocacy organization of pulmonary fibrosis and is committed to funding research to find effective therapies and, hopefully one day, a cure. The Pulmonary Fibrosis Foundation has a uniquely qualified team of individuals with broad expertise who are engaged with the PF community and are dedicated to achieving our goals.

 

Get in touch with us by calling 844.TalkPFF (844.825.5733) or emailing pcc@pulmonaryfibrosis.org.

 

For PFF Registry-specific questions, email registry@pulmonaryfibosis.org.

 

Learn more about the Pulmonary Fibrosis Foundation at pulmonaryfibrosis.org.

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Your gift to the PFF Patient Registry will enable us to expand patient enrollment and provide even greater access to investigators as they search for a cure for PF.

 

Your Privacy Matters

The Pulmonary Fibrosis Foundation Registry considers the protection of your privacy to be one of our most important responsibilities. We have set up strict protocols to protect your personal information. 

 

To review our policy, click here.