Pulmonary Fibrosis Foundation Patient Registry

Completed

Conditions studied: Interstitial Lung Disease (ILD), Idiopathic Pulmonary Fibrosis (IPF)

In brief

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

Key facts

Study ID

NCT02758808

Run by

Pulmonary Fibrosis Foundation

People needed

2004

Starts

2016-03-29

Expected to finish

2022-12-16

Last updated by the study team

2023-07-07

Who can join

Age: 18 and older, up to 99. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 18 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

Where it is running

• University fo Alabama at Birmingham — Birmingham, Alabama, United States
• Dignity Health St. Joseph's Hospital and Medical Center — Phoenix, Arizona, United States
• The University of Arizona — Tucson, Arizona, United States
• UCLA, David Geffen School of Medicine at UCLA — Los Angeles, California, United States
• University of California at San Francisco — San Francisco, California, United States
• Stanford University — Stanford, California, United States
• National Jewish Health — Denver, Colorado, United States
• Yale School of Medicine — New Haven, Connecticut, United States
• University of Miami — Miami, Florida, United States
• Piedmont Healthcare — Austell, Georgia, United States
• Northwestern University — Chicago, Illinois, United States
• University of Chicago — Chicago, Illinois, United States
• The University of Kansas Medical Center — Kansas City, Kansas, United States
• University of Louisville — Louisville, Kentucky, United States
• Tulane University — New Orleans, Louisiana, United States
• University of Maryland Medical Center — Baltimore, Maryland, United States
• Johns Hopkins University - School of Medicine — Baltimore, Maryland, United States
• Massachusetts General Hospital — Boston, Massachusetts, United States
• University of Michigan — Ann Arbor, Michigan, United States
• Regents of the University of Minnesota Twin Cities — Minneapolis, Minnesota, United States
• Mayo Clinic — Rochester, Minnesota, United States
• Washington University School of Medicine — St Louis, Missouri, United States
• Columbia University Medical Center — New York, New York, United States
• Weill Cornell Medical College — New York, New York, United States
• University of Rochester — Rochester, New York, United States

Full record on ClinicalTrials.gov

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