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Patients and families build a living database of pulmonary fibrosis

NCT ID NCT05382572

Knowledge-focused Sponsor: Pulmonary Fibrosis Foundation 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Sep 17, 2026 · Last updated Sep 18, 2026 · Updated 1 time

Summary

The Pulmonary Fibrosis Foundation runs an online registry where people with pulmonary fibrosis or interstitial lung disease, their caregivers, and their family members can share information about their health and experiences. Participants enroll themselves and answer questions over time, creating a long-term dataset. Researchers can then use this shared information to study how the disease unfolds and to plan future studies.

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
A large, shared dataset could help researchers spot patterns in how pulmonary fibrosis starts, changes, and responds to care, which may guide future studies and treatments.
What could go wrong
This registry only collects information; it does not test a treatment. The data may be incomplete or uneven, and any patterns found would need confirmation in separate studies before they change care.

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 10,000 people

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

Started

Jul 2022

Expected to finish

Jul 2027

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

The Community Registry will enroll three different cohort groups: 1. Patients with PF or ILD, including those who are post lung transplant 2. Caregivers of patients with PF or ILD 3. Family members of patients with PF or ILD

Ages

18 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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: In order to be eligible to participate in this study, an individual must meet all of the following criteria: 1. Provision of signed and dated informed consent form online 2. Male or female, aged 18 or older 3. Affected by PF as a member of at least one of the following cohorts: 1. An individual diagnosed with PF or ILD, including those who are post lung transplant, or 2. An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or 3. A family member (defined as parent, full or half-sibling, or child) of an individual with PF or ILD. 4. Has internet access and a valid email address. Exclusion Criteria: An individual who meets any of the following criteria will be excluded from participation in this study: 1. Primary residence or place of care is outside of the US. 2. Inability or unwillingness of a participant to provide informed consent or comply with study protocol. 3. Any condition or circumstance not listed above, which, in the opinion of the investigator, may pose additional risks from participation in the study, may interfere with the participant's ability to comply with study requirements or that may impact the quality or interpretation of the data obtained from the study. 4. Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded. * Sarcoid * Lymphangioleiomyomatosis (LAM) * Pulmonary alveolar proteinosis (PAP) * Cystic fibrosis (CF) * Amyloidosis

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Conditions

The condition(s) this trial relates to.

idiopathic pulmonary fibrosis interstitial lung disease pulmonary fibrosis

As listed by the trial registrant

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

Idiopathic pulmonary fibrosis Interstitial lung disease Lung fibrosis Progressive pulmonary fibrosis Pulmonary fibrosis

How to take part

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

  1. The places running it

    1 site. 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

  • Pulmonary Fibrosis Foundation

    RECRUITING

    Chicago, Illinois, 60611, United States

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