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

Junelle Speller
Vice President, PFF Registry

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 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 Qua
lity

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

PFF Registry Management

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

Junelle Speller Vice President, PFF Registry

Kevin R. Flaherty, MD, MS Steering Committee Chair, PFF Registry

Amy Hajari Case, MD 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

William T. Schmidt President and Chief Executive Officer

Scott Staszak Chief Operating Officer

Laura Sadler Chief Marketing Officer

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

Jennifer Mefford  Vice President, Corporate Partnerships

PFF Registry Steering Committee

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

Junelle Speller  Vice President, PFF Registry

Meredith Broderick, PharmD  Director of Medical Affairs, United Therapeutics

Cindy BurgPharmD, BCPS  Senior Medical Science Director, Genentech

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

Elizabeth Freiheit, PhD Managing Director, University of Michigan Department of Biostatistics – SABER

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

Nabeel Hamzeh, MD  Associate Professor of Internal Medicine, University of Iowa Health Care

Lisa Lancaster, MD  Associate Professor of Medicine, Vanderbilt Health

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

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

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

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 Care Center Registry. 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.

Data Coordinating Center

The data coordinating center (DCC) at the Statistical Analysis of Biomedical and Educational Research (SABER) at the University of Michigan provides the computer infrastructure and houses the Registry’s database and biosamples. Additionally, the DCC data scientists work with researchers to hone their ideas and verify that the Registry data can support their proposed research studies. Support from the DCC 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 help@pulmonaryfibrosis.org.

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

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

Donate Today

Your gift to the PFF 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.

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.