Den här översättningen är inte klar ännu. Den här sidan är just nu på engelska.

Gå till den engelska sidan

Cure My Disease

Don't miss your cure!

 Log in / Sign up

Massive lung disease registry aims to unlock secrets of progressive fibrosis

NCT ID NCT01915511

Knowledge-focused Sponsor: Duke University Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 26, 2026 · Last updated Aug 13, 2026 · Updated 5 times

Summary

This registry is following 3,000 adults with idiopathic pulmonary fibrosis (IPF) or other chronic fibrosing interstitial lung diseases (ILDs) to understand how these conditions progress over time. Researchers collect information on symptoms, treatments, quality of life, and store blood samples and lung scans for future studies. The goal is to learn more about the natural history of these diseases and improve care, but 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 registry could provide valuable insights into how these lung diseases progress and how they are best managed, potentially guiding future treatments.
What could go wrong
This is an observational registry, not a treatment trial. It collects data only, so it won't directly improve health for participants. Results depend on accurate reporting and may take years to yield useful findings.

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

About 3,000 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2014

Expected to finish

Jan 2031

An estimate. End dates often move.

Lead sponsor

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

Subjects with a new diagnosis of IPF or a non- IPF chronic fibrosing ILD established at the time of enrollment in the registry are eligible for participation in the IPF-PRO/ILD-PRO registry if the participant meets the selection criteria.

Ages

21 years and older

Sex

Anyone

Healthy volunteers

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

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Willing and able to provide informed consent * Established a new diagnosis (within 12 months) of IPF by the enrolling center. * Age 21 years or older, or * Diagnosis of a non-IPF ILD of any duration, including, but not limited to Idiopathic Non-Specific Interstitial Pneumonia (iNSIP), Unclassifiable Idiopathic Interstitial Pneumonias (IIPs), Interstitial Pneumonia with Autoimmune Features (IPAF), Autoimmune ILDs such as Rheumatoid Arthritis (RA-ILD) and Systemic Sclerosis (SSc-ILD), Chronic Hypersensitivity Pneumonitis (HP), Sarcoidosis or Exposure-related ILDs such as asbestosis with progressive phenotype during the last 24 months by the enrolling center that meets the following criteria: * Chronic fibrosing ILD as defined by reticular abnormality with traction bronchiectasis with or without honeycombing confirmed by chest HRCT scan and/or lung biopsy. * Progressive phenotype as defined by fulfilling at least one of the criteria below of fibrotic changes (progression set point) within the last 24 months regardless of treatment considered appropriate in individual ILDs (8): * decline in FVC % predicted (% pred) based on ≥10% relative decline * decline in FVC % pred based on ≥5 - \<10% relative decline in FVC combined with worsening of respiratory symptoms as assessed by the site investigator * decline in FVC % pred based on ≥5 - \<10% relative decline in FVC combined with increasing extent of fibrotic changes on chest imaging (HRCT scan) as assessed by the site investigator * decline in DLCO % pred based on≥ 10% relative decline * worsening of respiratory symptoms as well as increasing extent of fibrotic changes on chest imaging (HRCT scan) as assessed by the site investigator independent of FVC change. The relative decline for FVC % predicted is calculated using the formula: Relative Decline= (FVC % Pred (Reference)-FVC % Pred (Screening))/(FVC % Pred (Reference))×100%, where FVC % Pred (Reference) is the greatest measurement of FVC % predicted in the 24 months prior to screening and FVC % Pred (Screening) is the measurement of FVC % predicted at screening. The relative decline for DLCO % predicted is calculated using the formula: Relative Decline= (DLCO % Pred (Reference)-DLCO % Pred (Screening))/(DLCO % Pred (Reference))×100%, Where DLCO % Pred (Reference) is the greatest measurement of DLCO % Pred in the 24 months prior to screening and DLCO % Pred (Screening) is the measurement of DLCO % Pred at screening Exclusion Criteria: * Malignancy, treated or untreated, other than skin or early -stage prostate cancer, within the past 5 years * Currently listed for lung transplantation at the time of enrollment * Currently enrolled in an interventional clinical trial at the time of enrollment in this registry * For the additional IPF cohort of 1000 individuals, previous enrollment in this registry.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for Asbestosis are added.

Vår säkerhetsrekommendation!

Genom att skicka in godkänner du våra Användarvillkor

Conditions

The condition(s) this trial relates to.

asbestosis hypersensitivity pneumonitis idiopathic pulmonary fibrosis interstitial lung disease non-specific interstitial pneumonia pulmonary fibrosis pulmonary systemic sclerosis rheumatoid arthritis-associated interstitial lung disease sarcoidosis

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Idiopathic pulmonary fibrosis, interstitial lung disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    39 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Baylor College of Medicine

    RECRUITING

    Houston, Texas, 77030, United States

  • Baylor University Medical Center at Dallas

    RECRUITING

    Dallas, Texas, 75246, United States

  • Cleveland Clinic

    RECRUITING

    Cleveland, Ohio, 44195, United States

  • Duke University

    RECRUITING

    Durham, North Carolina, 27705, United States

  • Emory University

    RECRUITING

    Atlanta, Georgia, 30322, United States

  • Henry Ford Health

    RECRUITING

    Detroit, Michigan, 48202, United States

  • Houston Methodist Lung Center

    RECRUITING

    Houston, Texas, 77030, United States

  • Inova

    RECRUITING

    Falls Church, Virginia, 22042-3307, United States

  • Loyola University Health System

    RECRUITING

    Maywood, Illinois, 60153, United States

  • Medical University of South Carolina

    RECRUITING

    Charleston, South Carolina, 29425, United States

  • NYU Medical Center

    ACTIVE_NOT_RECRUITING

    New York, New York, 10016, United States

  • Northwestern University

    RECRUITING

    Evanston, Illinois, 60611, United States

  • Oregon Clinic

    RECRUITING

    Portland, Oregon, 97220, United States

  • PMG Research

    ACTIVE_NOT_RECRUITING

    Wilmington, North Carolina, 28401, United States

  • Piedmont Healthcare

    RECRUITING

    Austell, Georgia, 30106, United States

  • Pulmonix LLC

    RECRUITING

    Greensboro, North Carolina, 27403, United States

  • Stanford University

    RECRUITING

    Stanford, California, 94305, United States

  • Temple University

    RECRUITING

    Philadelphia, Pennsylvania, 19140, United States

  • The Medical College of Wisconsin

    ACTIVE_NOT_RECRUITING

    Milwaukee, Wisconsin, 53226, United States

  • The Ohio State University

    RECRUITING

    Columbus, Ohio, 43210, United States

  • The University of Texas Health Science Center At Houston

    RECRUITING

    Houston, Texas, 77030, United States

  • Thomas Jefferson University

    RECRUITING

    Philadelphia, Pennsylvania, 19144, United States

  • Tulane University

    RECRUITING

    New Orleans, Louisiana, 70112, United States

  • UNC Chapel Hill

    RECRUITING

    Chapel Hill, North Carolina, 27514, United States

  • University from Virginia

    ACTIVE_NOT_RECRUITING

    Charlottesville, Virginia, 22908, United States

  • University of Alabama - Birmingham

    RECRUITING

    Birmingham, Alabama, 35294, United States

  • University of Arizona

    RECRUITING

    Tucson, Arizona, 85721, United States

  • University of California - Los Angeles

    RECRUITING

    Los Angeles, California, 90024, United States

  • University of Chicago

    RECRUITING

    Chicago, Illinois, 60637, United States

  • University of Cincinnati Medical Center

    ACTIVE_NOT_RECRUITING

    Cincinnati, Ohio, 45267, United States

  • University of Colorado

    RECRUITING

    Aurora, Colorado, 80045, United States

  • University of Florida

    RECRUITING

    Gainesville, Florida, 32610-3175, United States

  • University of Kansas

    TERMINATED

    Kansas City, Kansas, 66160, United States

  • University of Michigan

    ACTIVE_NOT_RECRUITING

    Ann Arbor, Michigan, 48109, United States

  • University of Minnesota

    RECRUITING

    Minneapolis, Minnesota, 55455, United States

  • University of Mississippi Medical Center

    RECRUITING

    Jackson, Mississippi, 39216, United States

  • University of Oklahoma

    RECRUITING

    Oklahoma City, Oklahoma, 73104, United States

  • University of South Florida

    RECRUITING

    Tampa, Florida, 33606, United States

  • University of Southern California

    RECRUITING

    Los Angeles, California, 90033, United States

  • University of Texas Southwestern

    RECRUITING

    Dallas, Texas, 75235, United States

  • University of Utah

    RECRUITING

    Salt Lake City, Utah, 84108, United States

  • University of Vermont Lung Center

    ACTIVE_NOT_RECRUITING

    Colchester, Vermont, 05446, United States

  • Vanderbilt University

    RECRUITING

    Nashville, Tennessee, 37232, United States

  • Wake Forest Baptist Health

    RECRUITING

    Winston-Salem, North Carolina, 27157, United States

  • Washington University

    RECRUITING

    St Louis, Missouri, 63110, United States

  • Weill Medical College of Cornell University

    RECRUITING

    New York, New York, 10065, United States

  • Yale University

    RECRUITING

    New Haven, Connecticut, 06520, United States

More trials for these conditions

Other studies related to the condition(s) this trial covers.