Cathie Spino, ScD
Director of Statistical Analysis of Biomedical and Educational Research (SABER) School of Public Health, University of Michigan
Joyce Lee, MD, MS
University of Colorado Anschutz Medical Campus,
PFF Senior Medical Advisor, Research and Health Care Quality
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.
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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 Senior Director, 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 Burg, PharmD, 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 pcc@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 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
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.