Pulmonary FibrosisNCT05382572
Pulmonary Fibrosis Foundation Community Registry
An observational study of Pulmonary Fibrosis and Interstitial Lung Disease, run by Pulmonary Fibrosis Foundation at 1 site in United States.
Trial summary
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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- Pulmonary Fibrosis, Interstitial Lung Disease, Lung Fibrosis
- How many people
- 10,000 participants
- Where
- 1 siteUnited States
- Study dates
- 11 Jul 2022to 1 Jul 2027
- How long will I take part?
- 5 Years
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Study population: 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
Who may be able to join
- In order to be eligible to participate in this study, an individual must meet all of the following criteria:
- Provision of signed and dated informed consent form online
- Male or female, aged 18 or older
- Affected by PF as a member of at least one of the following cohorts:
- An individual diagnosed with PF or ILD, including those who are post lung transplant, or
- An individual who has cared (currently or in the past) for an individual with PF or ILD, and / or
- A family member (defined as parent, full or half-sibling, or child) of an individual with PF or ILD.
- Has internet access and a valid email address.
Who cannot join
- An individual who meets any of the following criteria will be excluded from participation in this study:
- Primary residence or place of care is outside of the US.
- Inability or unwillingness of a participant to provide informed consent or comply with study protocol.
- 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.
- Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.
- Sarcoid
Show all 10Show fewer
- Lymphangioleiomyomatosis (LAM)
- Pulmonary alveolar proteinosis (PAP)
- Cystic fibrosis (CF)
- Amyloidosis
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United States1 site, 1 recruiting
- Recruiting
Pulmonary Fibrosis Foundation
Chicago, Illinois, 60611
Kevin Flaherty, MD, 844-825-5733, registry@pulmonaryfibrosis.org
Kevin Flaherty, MD
About this study
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.
Read the detailed description
The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups:
- Patients with PF, including those who are post lung transplant
- Caregivers of patients with PF
- Family members of patients with PF
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.
- Conditions
- Pulmonary Fibrosis, Interstitial Lung Disease, Lung Fibrosis, Idiopathic Pulmonary Fibrosis, Progressive Pulmonary Fibrosis
- Medical subject headings
- Pulmonary Fibrosis, Lung Diseases, Interstitial, Idiopathic Pulmonary Fibrosis
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Patients | An individual diagnosed with PF or ILD, including those who are post lung transplant. | |
| Family Members | A family member (defined as biological parent, full or half-sibling, or biological child) of an individual with PF or ILD. | |
| Caregivers | An individual who has cared (currently or in the past) for an individual with PF or ILD. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Number of patients who have or had interstitial lung disease (ILD) enrolled in the PFF Community Registry
Measured: 3 years
Number of caregivers of patients who have or had ILD enrolled in the PFF Community Registry
Measured: 3 years
Number of family members of patients who have or had ILD enrolled in the PFF Community Registry
Measured: 3 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted19 May 2022
- Study start11 Jul 2022
- Primary completion1 Jul 2027 (estimated)
- Study completion1 Jul 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Pulmonary FibrosisStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Cohort
- Time perspective
- Prospective
- Enrolment
- 10,000 participants (estimated)
- Target duration
- 5 Years
Sponsor and investigators
- Lead sponsor
- Pulmonary Fibrosis Foundation
- Sponsor type
- University, hospital or other
- Collaborators
- University of Michigan
- Responsible party
- Sponsor
- Investigators
- Tejaswini Kulkarni, MD, Principal investigator, Pulmonary Fibrosis Foundation
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05382572
- Sponsor's protocol ID
- HUM00202724
- Status last verified
- Sep 2026
- First submitted
- 16 May 2022
- Last updated
- 17 Sep 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Study at a glance
From the registry record, last updated by the sponsor on 17 Sep 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Pulmonary Fibrosis Foundation Community Registry
- ClinicalTrials.gov ID
- NCT05382572
- Acronym / sponsor ID
- HUM00202724
- Conditions
- Pulmonary Fibrosis, Interstitial Lung Disease, Lung Fibrosis, Idiopathic Pulmonary Fibrosis, Progressive Pulmonary Fibrosis
- Study type
- Observational
- Recruitment status
- Recruiting
- Enrolment
- 10,000 participants (estimated)
- Lead sponsor
- Pulmonary Fibrosis FoundationUniversity, hospital or other
- Collaborators
- University of Michigan
- Study start
- 11 Jul 2022 (actual)
- Primary completion
- 1 Jul 2027 (estimated)
- Study completion
- 1 Jul 2027 (estimated)
- First posted
- 19 May 2022 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
The PFF Community Registry is an observational, longitudinal cohort study. The Community Registry will enroll three different cohort groups:
- Patients with PF, including those who are post lung transplant
- Caregivers of patients with PF
- Family members of patients with PF
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.
Study design
- Observational model
- Cohort
- Time perspective
- Prospective
- Target follow-up
- 5 Years
- Number of arms
- 3
| Arm | Type | Receives |
|---|---|---|
| Patients | – | –An individual diagnosed with PF or ILD, including those who are post lung transplant. |
| Family Members | – | –A family member (defined as biological parent, full or half-sibling, or biological child) of an individual with PF or ILD. |
| Caregivers | – | –An individual who has cared (currently or in the past) for an individual with PF or ILD. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- 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
Key inclusion criteria (8 listed)
- In order to be eligible to participate in this study, an individual must meet all of the following criteria:
- Provision of signed and dated informed consent form online
- Male or female, aged 18 or older
- Affected by PF as a member of at least one of the following cohorts:
- Has internet access and a valid email address.
Key exclusion criteria (10 listed)
- An individual who meets any of the following criteria will be excluded from participation in this study:
- Primary residence or place of care is outside of the US.
- Inability or unwillingness of a participant to provide informed consent or comply with study protocol.
- 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.
- Patients who were diagnosed with any of the below lung diseases. Similarly caregivers and family members associated with these diseases would be excluded.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 17 Sep 2026.
- Pulmonary Fibrosis Foundation Registry InformationLink provided by the sponsor.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Tejaswini Kulkarni, MD principal investigator
Pulmonary Fibrosis Foundation
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Pulmonary Fibrosis and Interstitial Lung Disease, run by Pulmonary Fibrosis Foundation at 1 site in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 8 inclusion and 10 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 17 Sep 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Jessica E Shore, PhD (312-818-5731, registry@pulmonaryfibrosis.org), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Number of patients who have or had interstitial lung disease (ILD) enrolled in the PFF Community Registry (time frame: 3 years). The study lists 3 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 17 Sep 2026.