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The PFF Registry has accomplished a lot in a short time, including raising awareness and advancing research. The next phase of the Registry will provide an even clearer picture of the true impact of PF by gathering meaningful information from patients, lung transplant recipients, family members, and caregivers.

Junelle Speller
Vice President, PFF Registry

Patient Powered. Data Driven. Research Results.

Our patients living with pulmonary fibrosis, their families who support them, and the health care providers who care for them all deserve high-quality comprehensive data that informs their health decisions. We at the data coordinating center 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

By leveraging the data in the Registry and partnering with our Care Center Network sites, we can really start to figure out what are important and essential elements to patient care and learn from one another. I truly believe that we will be able to figure out what care elements/factors will help our patients live better and longer lives with their pulmonary fibrosis.

Joyce Lee, MD, MS
University of Colorado Anschutz Medical Campus,
PFF Senior Medical Advisor, Research and Health Care Quality

The Registry follows thousands of participants for as long as they are able to participate. This means huge amounts of patient data are available to researchers who are eager to answer questions about PF.

Kevin R. Flaherty, MD, MS
University of Michigan Health System,
Steering Committee Chair PFF Registry and PFF Care Center Network

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 across the United States.

PFF Staff

William T. Schmidt President and Chief Executive Officer

Scott Staszak Chief Operating Officer

Laura Sadler Chief Marketing 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

PFF Registry Steering Committee

Cindy Burg, PharmD, BCPS Senior Medical Science Director, Genentech

Kevin R. Flaherty, MD, MS Chair & Professor of Medicine, Division of Pulmonary and Critical Care Medicine, University of Michigan

Nishant Gupta, MD Director, University of Cincinnati Interstitial Lung Disease program

Nabeel Hamzeh, MD Associate Professor of Internal Medicine - Pulmonary, Critical Care, and Occupational Medicine, University of Iowa Health Care

Muhammad Ishtiaq, PhD Project Manager, SABER, University of Michigan

Lisa Lancaster, MD Associate Professor of Medicine, Vanderbilt Health

Kathleen O. Lindell, PhD, RN Associate Professor, Medical University of South Carolina

Tracy Luckhardt, MD, MS Associate Professor, University of Alabama at Birmingham Medicine

Sydney Montesi, MD Assistant Professor of Medicine, Massachusetts General Hospital

Justin Oldham, MD, MS Assistant Professor of Medicine, University of California at Davis Health

Ganesh Raghu, MD Professor of Medicine & Lab Medicine, University of Washington

William T. Schmidt President and Chief Executive Officer, PFF

Jessica Shore, RN, PhD Vice President, Research and Programs, PFF

Junelle SpellerVice President, PFF Registry

Cathie Spino, ScD Director, SABER, University of Michigan

Scott Staszak Chief Operating Officer, PFF

Jack Stauffer, MD Senior Medical Director, Genentech

Paul Wolters, MD Professor, University of California at San Francisco

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.

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.

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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

PFF Registry News

To view the latest news and updates about the PFF Registry, click here.

Contact Us

To get in touch with the PFF, please email registry@pulmonaryfibrosis.org.

PFF Registry

Patient Powered. Data Driven. Research Results.