Can a thousand patient records unlock better care for a rare lung disease?
NCT ID NCT02407431
First seen Sep 03, 2026 · Last updated Sep 04, 2026 · Updated 1 time
Summary
Researchers are assembling a large group of adults with idiopathic pulmonary fibrosis (IPF), a progressive lung disease, to support future patient-centered studies. The team will combine electronic health records with patient-reported outcomes from clinics at several academic medical centers. The goal is to create a rich data resource that can answer questions important to patients and their doctors. This is an observational effort, so participants receive no experimental treatment.
What this could mean
Our plain-language read of the trial. This is informational only, not medical advice or a prediction.
- What this could lead to
- If successful, this cohort could enable many future studies that improve care and quality of life for people with IPF.
- What could go wrong
- This is an observational study, not a treatment trial. It will not test any new therapy, and results depend on the quality and completeness of the collected data.
This is an AI summary of the original study and may miss details. Read our disclaimer.
Study facts
What this study's own registry entry says, in plain language.
- Participants
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About 1,000 people
The number the study aims to enrol. It can still change while the study runs.
- Started
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Mar 2015
- Expected to finish
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Jul 2030
An estimate. End dates often move.
- Lead sponsor
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Other sponsor
The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.
Who can take part
This study's own entry requirements. Only the study team can say for certain whether you qualify.
Who is studied
The target study population is adults with IPF who receive health care at one of the PaTH Network institutions.
- Ages
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18 to 100 years
- Sex
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Anyone
- Healthy volunteers
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Not accepted
This study is not open to healthy volunteers. The entry requirements below say who it is open to.
Show the full entry requirements Hide the full entry requirements
Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.
Inclusion Criteria: * The target study population is adults identified as having IPF (through the PaTH IPF computable phenotype algorithm or a local IPF registry). Exclusion Criteria: * Age \<18 years * Deceased * Not proficient in English * Has not had at least one outpatient encounter in the past 18 months at the PaTH health system's pulmonary specialty clinic through which they are recruited * Lung transplant * Already enrolled in the PaTH Clinician-Patient Partnership Cohort at another PaTH institution
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Anuradha Paranjape
Philadelphia, Pennsylvania, 19140, United States
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Jody McCullough
Hershey, Pennsylvania, 17033, United States
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Johns Hopkins University
Baltimore, Maryland, 21231, United States
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University of Pittsburgh
Pittsburgh, Pennsylvania, 15213, United States
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University of Utah
Salt Lake City, Utah, 84108, United States
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