Idiopathic Pulmonary Fibrosis and Interstitial Lung Disease Prospective Outcomes Registry
Start Date
6/1/2014
Completion Date
1/1/2031
Summary
The Idiopathic Pulmonary Fibrosis Prospective Outcomes (IPF-PRO) Registry started recruiting in 2014 with the objective of studying Idiopathic Pulmonary Fibrosis. In 2018, the registry expanded to include recruitment of participants with other chronic fibrosing interstitial lung diseases (ILDs) with progressive phenotype also referred to as progressive fibrosing interstitial lung diseases in the Chronic Fibrosis Interstitial Lung Disease with Progressive Phenotype (ILD-PRO) Registry. When the third phase of the registry begins, the IPF-PRO registry will enroll additional patients with idiopathic pulmonary fibrosis. This IPF-PRO registry is a prospective registry that will collect information regarding the natural history, health care interactions, participant reported questionnaire data to assess quality of life, and the methods of treatment of participants with a diagnosis of idiopathic pulmonary fibrosis (IPF) or of another chronic fibrosing interstitial lung disease (ILD) with progressive phenotype established at the enrolling centers. In addition, blood samples and chest image studies will be collected and banked for future research projects.
Detailed Description
This registry originally enrolled a total of 1002 participants newly diagnosed with IPF and continues to enroll patients with other chronic fibrosing ILDs with newly identified progressive phenotype to reach an enrollment of 1000 patients. Participants will be enrolled in three phases, (IPF-PRO and ILD-PRO) over a span of 8 years at approximately 50 sites experienced in the diagnosis and treatment of ILD in the United States. Enrollment for the original IPF cohort started in 2014 and ended in October 2018, with 1002 total participants enrolled. In the third phase of the registry new enrollment for patients with IPF will restart in 2023-2024 with the plan to enroll up to 1000 new IPF patients, for a total IPF enrollment of 2000. Enrollment for other chronic fibrosing ILDs with newly identified progressive phenotype cohort was initiated in February 2019 and will end when enrollment reaches 1000 participants with the potential of enrolling another 1000 participants with other chronic fibrosing ILDs with newly identified without a progressive phenotype. Data and samples will be collected from participants for approximately 5 years for the IPF cohort. For the chronic fibrosing ILD with progressive phenotype cohort, data and samples will be collected for a minimum of 3 years, up to approximately 5 years. Participant management and treatment decisions will be determined by participants and their health care professionals.
Eligibility Criteria
Age Range: 21 years to No maximum
Conditions
Locations
University of Alabama - Birmingham
Birmingham, Alabama 35294
United States
University of Arizona
Tucson, Arizona 85721
United States
University of California - Los Angeles
Los Angeles, California 90024
United States
University of Southern California
Los Angeles, California 90033
United States
Stanford University
Stanford, California 94305
United States
University of Colorado
Aurora, Colorado 80045
United States
Yale University
New Haven, Connecticut 06520
United States
University of Florida
Gainesville, Florida 32610-3175
United States
University of South Florida
Tampa, Florida 33606
United States
Emory University
Atlanta, Georgia 30322
United States
Piedmont Healthcare
Austell, Georgia 30106
United States
University of Chicago
Chicago, Illinois 60637
United States
Northwestern University
Evanston, Illinois 60611
United States
Loyola University Health System
Maywood, Illinois 60153
United States
University of Kansas
Kansas City, Kansas 66160
United States
Tulane University
New Orleans, Louisiana 70112
United States
University of Michigan
Ann Arbor, Michigan 48109
United States
University of Minnesota
Minneapolis, Minnesota 55455
United States
University of Mississippi Medical Center
Jackson, Mississippi 39216
United States
Washington University
St Louis, Missouri 63110
United States
NYU Medical Center
New York, New York 10016
United States
Weill Medical College of Cornell University
New York, New York 10065
United States
UNC Chapel Hill
Chapel Hill, North Carolina 27514
United States
Duke University
Durham, North Carolina 27705
United States
Pulmonix LLC
Greensboro, North Carolina 27403
United States
PMG Research
Wilmington, North Carolina 28401
United States
Wake Forest Baptist Health
Winston-Salem, North Carolina 27157
United States
University of Cincinnati Medical Center
Cincinnati, Ohio 45267
United States
Cleveland Clinic
Cleveland, Ohio 44195
United States
The Ohio State University
Columbus, Ohio 43210
United States
University of Oklahoma
Oklahoma City, Oklahoma 73104
United States
Oregon Clinic
Portland, Oregon 97220
United States
Thomas Jefferson University
Philadelphia, Pennsylvania 19144
United States
Medical University of South Carolina
Charleston, South Carolina 29425
United States
Vanderbilt University
Nashville, Tennessee 37232
United States
University of Texas Southwestern
Dallas, Texas 75235
United States
Baylor University Medical Center at Dallas
Dallas, Texas 75246
United States
Baylor College of Medicine
Houston, Texas 77030
United States
Houston Methodist Lung Center
Houston, Texas 77030
United States
The University of Texas Health Science Center At Houston
Houston, Texas 77030
United States
University of Utah
Salt Lake City, Utah 84108
United States
University from Virginia
Charlottesville, Virginia 22908
United States
Inova
Falls Church, Virginia 22042-3307
United States
The Medical College of Wisconsin
Milwaukee, Wisconsin 53226
United States