Pulmonary Fibrosis Foundation Patient Registry
PFFR
1 other identifier
observational
2,004
1 country
42
Brief Summary
The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000 patients with interstitial lung disease (ILD) at approximately 40 clinical sites in the US. The Registry is targeting enrollment of approximately 60% of the 2,000 ILD participants to have idiopathic pulmonary fibrosis (IPF). The aim of the Registry is to create a cohort of well-characterized patients with interstitial lung disease (ILD) for participation in retrospective and prospective research
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Mar 2016
Longer than P75 for all trials
42 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
Click on a node to explore related trials.
Study Timeline
Key milestones and dates
Study Start
First participant enrolled
March 29, 2016
CompletedFirst Submitted
Initial submission to the registry
April 14, 2016
CompletedFirst Posted
Study publicly available on registry
May 3, 2016
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 16, 2022
CompletedStudy Completion
Last participant's last visit for all outcomes
December 16, 2022
CompletedJuly 7, 2023
July 1, 2023
6.7 years
April 14, 2016
July 5, 2023
Conditions
Outcome Measures
Primary Outcomes (2)
Change in % predicted FVC
Analysis of registry data will lead to aggregated reports summarizing the pulmonary function
Up to 55 months
Change in % predicted DLCO
Analysis of registry data will lead to aggregated reports summarizing the pulmonary function
Up to 55 months
Eligibility Criteria
At least 2,000 patients with interstitial lung disease (ILD) at approximately 40 clinical sites in the US. The Pulmonary Fibrosis Foundation Patient Registry will collect data on at least 2,000 patients at approximately 40 clinical sites in the US. The Registry is targeting enrollment of approximately 60% of the 2,000 ILD participants to have idiopathic pulmonary fibrosos (IPF).
You may qualify if:
- years old or older
- Understand and sign the informed consent document
- ILD Diagnosis must be made / confirmed at a participating Registry center.
- The diagnostic evaluation must include, at a minimum, a medical history, physical examination, pulmonary function testing and a computerized tomography (CT) scan of the chest.
- If patients exhibit another pulmonary disease (such as emphysema or asthma), the primary disease must be ILD.
- Anticipated additional follow up at the Registry center within one year.
You may not qualify if:
- \. Diagnosed with:
- Sarcoid
- Lymphangioleiomyomatosis (LAM)
- Pulmonary alveolar proteinosis (PAP)
- Cystic fibrosis (CF)
- Amyloidosis
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Pulmonary Fibrosis Foundationlead
- University of Michigancollaborator
Study Sites (42)
University fo Alabama at Birmingham
Birmingham, Alabama, 35294, United States
Dignity Health St. Joseph's Hospital and Medical Center
Phoenix, Arizona, 85013, United States
The University of Arizona
Tucson, Arizona, 85724-0001, United States
UCLA, David Geffen School of Medicine at UCLA
Los Angeles, California, 90095, United States
University of California at San Francisco
San Francisco, California, 94143-2204, United States
Stanford University
Stanford, California, 94305, United States
National Jewish Health
Denver, Colorado, 80206, United States
Yale School of Medicine
New Haven, Connecticut, 06510-3206, United States
University of Miami
Miami, Florida, 33138, United States
Piedmont Healthcare
Austell, Georgia, 30106, United States
Northwestern University
Chicago, Illinois, 60611, United States
University of Chicago
Chicago, Illinois, 60637, United States
The University of Kansas Medical Center
Kansas City, Kansas, 66160, United States
University of Louisville
Louisville, Kentucky, 40202, United States
Tulane University
New Orleans, Louisiana, 70112, United States
University of Maryland Medical Center
Baltimore, Maryland, 21201, United States
Johns Hopkins University - School of Medicine
Baltimore, Maryland, 21205, United States
Massachusetts General Hospital
Boston, Massachusetts, 02114, United States
University of Michigan
Ann Arbor, Michigan, 48109, United States
Regents of the University of Minnesota Twin Cities
Minneapolis, Minnesota, 55455, United States
Mayo Clinic
Rochester, Minnesota, 55905, United States
Washington University School of Medicine
St Louis, Missouri, 63110-1010, United States
Columbia University Medical Center
New York, New York, 10030, United States
Weill Cornell Medical College
New York, New York, 10065, United States
University of Rochester
Rochester, New York, 14642, United States
Stony Brook University Hospital
Stony Brook, New York, 11794-8172, United States
Duke University Medical Center
Durham, North Carolina, 27710, United States
University of Cincinnati
Cincinnati, Ohio, 45267, United States
The Ohio State University
Columbus, Ohio, 43221, United States
Pennsylvania State University
Hershey, Pennsylvania, 17033, United States
University of Pennsylvania
Philadelphia, Pennsylvania, 19128, United States
Temple University Health System
Philadelphia, Pennsylvania, 19129, United States
University of Pittsburgh
Pittsburgh, Pennsylvania, 15213, United States
Medical University of South Carolina
Charleston, South Carolina, 29425, United States
Vanderbilt University
Nashville, Tennessee, 37232, United States
University of Texas Southwestern Medical Center
Dallas, Texas, 75390, United States
The University of Texas Health Science Center at Houston
Houston, Texas, 77030, United States
UTHSC - San Antonio
San Antonio, Texas, 78253, United States
University of Utah
Salt Lake City, Utah, 84108, United States
University of Virginia Interstitial Lung Disease Clinic
Charlottesville, Virginia, 22908, United States
Inova Fairfax Hospital
Falls Church, Virginia, 22046, United States
University of Washington
Seattle, Washington, 98195-0001, United States
Related Publications (2)
Adegunsoye A, Bachman WM, Flaherty KR, Li Z, Gupta S. Use of Race-Specific Equations in Pulmonary Function Tests Impedes Potential Eligibility for Care and Treatment of Pulmonary Fibrosis. Ann Am Thorac Soc. 2024 Aug;21(8):1156-1165. doi: 10.1513/AnnalsATS.202309-797OC.
PMID: 38386005DERIVEDLee JS, Martin-Schwarze A, Freiheit E, Trzaskoma B, Burg C. Real-World Clinical Outcomes Based on Body Mass Index and Annualized Weight Change in Patients with Idiopathic Pulmonary Fibrosis. Adv Ther. 2023 Feb;40(2):691-704. doi: 10.1007/s12325-022-02382-0. Epub 2022 Dec 8.
PMID: 36481866DERIVED
Biospecimen
whole blood, plasma, PAXgene
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- STUDY CHAIR
Kevin R Flaherty, MD
University of Michigan
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 7 Years
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Chief Medical Officer
Study Record Dates
First Submitted
April 14, 2016
First Posted
May 3, 2016
Study Start
March 29, 2016
Primary Completion
December 16, 2022
Study Completion
December 16, 2022
Last Updated
July 7, 2023
Record last verified: 2023-07
Data Sharing
- IPD Sharing
- Will not share