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

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

Joseph-Laksy

Researchers are eager to study the causes, treatments, and impact of pulmonary fibrosis and interstitial lung disease. The Registry follows thousands of people for as long as they are able to participate. This means huge amounts of data are available for researchers to test.

Joseph Lasky, MD
PFF Chief Medical Officer
Tulane University Medical School

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

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 Patient Registry 

The PFF Patient Registry is administered at participating PFF Care Centers across the United States. The Care Center Network (CCN)  is a group of medical centers dedicated to improving the lives of those living with pulmonary fibrosis (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 statistical expertise, project management and study coordination, database development and management, and regulatory support of the PFF Registry.

PFF Registry Staff 

Misha Cadet, MPH, PMP, Project Manager, PFF Registry *SRC 

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

Joseph Lasky, MD, PFF Chief Medical Officer *SC

Amy Case, MD, FCCP, Senior Medical Advisor, Education and Awareness *SC

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

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

Jessica Shore, PhD, RN, PFF Vice President, Clinical Affairs and Quality

Bill Schmidt, President and Chief Executive Officer, PFF *SC

Scott Staszak, Chief Operating Officer, PFF *SC

Seth Klein, Chief Development Officer, PFF *SC

 SC= Steering Committee    SRC= Scientific Review Committee

PFF Registry Steering Committee

Nishant Gupta, MD, Care Center Network Investigator, Director, University of Cincinnati Interstitial Lung Disease program

Lisa Lancaster, MD, Care Center Network Investigator, Associate Professor of Medicine, Vanderbilt Health

Tracy Luckhardt, MD, MS, Care Center Network Investigator,  Associate Professor, University of Alabama at Birmingham Medicine

Sydney Montesi, MD, Care Center Network Investigator, Assistant Professor of Medicine, Massachusetts General Hospital

David O'Dwyer, MB, PhD, University of Michigan

Anna Podolanczuk, MD, MS, Weill Cornell

Meredith Broderick, PharmD, Director of Medical Affairs, United Therapeutics

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

PFF Scientific Review Committee

Mary Strek, MD, Interim Chair, Co-Director, Interstitial Lung Disease Clinic, University of Chicago Medicine 

Aman Pande, MD, Cleveland Clinic

Kerri Aronson, MD, Cornell Weil

Srihari Veeraraghavan, MD, Emory University

Brand Bemiss, MD, Loyola University of Chicago

Chao He, MD, University of Alabama at Birmingham

Tejaswini Kulkarni, MD, University of Alabama at Birmingham

Said Chaaban, MD, University of Kentucky

Chad Newton, MD, University of Texas Southwestern

Giselle Kolenic, MA, DCC Director of PFF Registry, SABER

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. Review our privacy policy.

PFF Registry News

View the latest news and updates about the PFF Registry.

Contact Us

For information about the PFF Registry, contact registry@pulmonaryfibrosis.org.

PFF Registry

Patient Powered. Data Driven. Research Results.