An observational study in Pulmonary Fibrosis, Interstitial Lung Disease and Lung Fibrosis, sponsored by Pulmonary Fibrosis Foundation. Recruiting at 1 site in United States. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-09-17.
Sponsored by Pulmonary Fibrosis Foundation · Observational
Among 236 studies in Idiopathic Pulmonary Fibrosis with a site in United States — 37 open to participants now, 52 under way, 8 of them phase 3. Idiopathic Pulmonary Fibrosis · United States.
Among the 236 studies in Idiopathic Pulmonary Fibrosis with a site in United States, this one is the 2nd largest by planned enrollment of the 45 observational ones, is one of 17 that started in 2022, is one of 46 observational ones, reaches primary completion later than 20 of the 51 other live ones, and was the 177th registered.
576 studies on the registry are indexed under Idiopathic Pulmonary Fibrosis; 123 are open to participants now.
This study's planned enrollment of 10,000 is above the median of 152 across 165 observational studies indexed under Idiopathic Pulmonary Fibrosis.
Browse Idiopathic Pulmonary Fibrosis studies →37 of the 236 studies in Idiopathic Pulmonary Fibrosis with a site in United States are open now, in 12 countries. Each count lists the studies.
Of the 86 Idiopathic Pulmonary Fibrosis studies recruiting now, 56 (65%) set no upper age limit and 8 (9%) stop at 75 or younger; 3 take children under 18; 15 take healthy volunteers.
This study: 18 Years and older · all sexes · healthy volunteers too.
The full table on the hub →236 studies; the count open now beside each. This study's row is marked.
First in 1999; this study’s year is marked. 17 started in 2022.
Median enrollment 61 across the 188 interventional studies, 450 across the 45 observational. Of the 169 that completed or were terminated, 85 (50%) have results posted.
134 of 236 have an industry lead sponsor. The 10 most frequent:
Pulmonary Fibrosis Foundation is the lead sponsor of 2 studies on the registry; 1 is open to participants now.
Pulmonary Fibrosis Foundation has 2 studies filed under Idiopathic Pulmonary Fibrosis — fewer than ten, so there is no comparison to draw.
15 of the studies in Idiopathic Pulmonary Fibrosis with a site in United States that are under way reach primary completion within a year, 2 of them phase 3. Phase 3 first, then by date:
| Study | Primary completion |
|---|---|
| NCT06238622Phase 3Boehringer IngelheimA Follow-up Study to Test Long-term Treatment With Nerandomilast in People With Pulmonary Fibrosis Who Took Part in a Previous Study With Nerandomilast | 2027-04-28 |
| NCT07868419Phase 3Trevi TherapeuticsIdiopathic Pulmonary Fibrosis (IPF)-Related Chronic Cough Reduction With Nalbuphine (NAL) Extended-Release (ER) Tablets | 2027-08 |
| NCT06736990Calluna Pharma ASA Phase 2 Study of CAL101 in Patients With Idiopathic Pulmonary Fibrosis | 2026-11 |
| NCT06853145University of VirginiaHyperpolarized Xenon-129 MRI in Idiopathic Pulmonary Fibrosis | 2026-12 |
| NCT03478553University of Colorado, DenverThe Genetics of Pulmonary Fibrosis | 2026-12-31 |
Among the 236 studies in Idiopathic Pulmonary Fibrosis with a site in United States, from their registry updates:
Pulmonary fibrosis (PF) results from a diverse group of health conditions and affects the lives of patients (including those who are post lung transplant), caregivers and family members. The Pulmonary Fibrosis Foundation Community Registry will offer an online portal where participants can self-enroll and directly contribute information about their experience with PF to be compiled into a longitudinal data set for use by researchers.
The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups:
This is an online registry open to individuals affected by PF in the US. It is not associated with a physical location or institution. Individuals may self-enroll online and contribute data to the Community Registry by answering a series of surveys at regular intervals.
Participants may also elect to be contacted about future research projects through the PFF Community Registry portal. However, this is not required to participate in the Community Registry itself.
576 studies on the registry are indexed under Idiopathic Pulmonary Fibrosis; 123 are open to participants now.
This study's planned enrollment of 10,000 is above the median of 152 across 165 observational studies indexed under Idiopathic Pulmonary Fibrosis.
Browse Idiopathic Pulmonary Fibrosis studies →Pulmonary Fibrosis Foundation is the lead sponsor of 2 studies on the registry; 1 is open to participants now.
Compared within Idiopathic Pulmonary Fibrosis, this study's primary condition as ClinicalTrials.gg classifies it; the registry's first condition term is Pulmonary Fibrosis. The counts are of registry records indexed under each term, refreshed daily. How we classify →
The Community Registry will enroll three different cohort groups:
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
In order to be eligible to participate in this study, an individual must meet all of the following criteria:
Affected by PF as a member of at least one of the following cohorts:
Exclusion Criteria:
An individual who meets any of the following criteria will be excluded from participation in this study:
Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.
Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Informed consent
Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.
You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.
Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.
An individual diagnosed with PF or ILD, including those who are post lung transplant.
A family member (defined as biological parent, full or half-sibling, or biological child) of an individual with PF or ILD.
An individual who has cared (currently or in the past) for an individual with PF or ILD.
Number of patients who have or had interstitial lung disease (ILD) enrolled in the PFF Community Registry
Time frame: 3 years
Number of caregivers of patients who have or had ILD enrolled in the PFF Community Registry
Time frame: 3 years
Number of family members of patients who have or had ILD enrolled in the PFF Community Registry
Time frame: 3 years
Plan to share: No
Started Jul 2022 (actual). Primary completion is estimated for Jul 2027, 59 months after the start.
Of 74 non-industry observational studies under Idiopathic Pulmonary Fibrosis, half reached primary completion within 63 months of starting (the median), counting those still running; a quarter within 29 and three quarters within 110. This study's planned 59 months is close to that.
Counting every sponsor, half of 88 studies reached it within 54 months; a quarter within 29 and three quarters within 98.
How these figures are worked out, and which studies are left out of them.
Eligibility is decided by the study team. Share this record with your doctor or contact the team directly.
Contact study teamGet an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
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Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Idiopathic Pulmonary Fibrosis →
Pulmonary Fibrosis Foundation