Recruiting

Observational Study

Sponsor:

Pulmonary Fibrosis Foundation

Code:

NCT05382572

Conditions

Pulmonary Fibrosis

Interstitial Lung Disease

Lung Fibrosis

Idiopathic Pulmonary Fibrosis

Progressive Pulmonary Fibrosis

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

Study Details

Brief 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. 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.

Conditions

Pulmonary Fibrosis

Interstitial Lung Disease

Lung Fibrosis

Idiopathic Pulmonary Fibrosis

Progressive Pulmonary Fibrosis

Study ID

NCT05382572

Start date

Jul 11, 2022

Status verified date

Sep, 2026

Completion date

Jul 1, 2027

Anticipated

Primary completion date

Jul 1, 2027

Anticipated

Eligibility Criteria

Eligibility Criteria

Sex: All

Age: 18+

Healthy Volunteers: Accepted

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

Study Design

Enrollment

10000 participants

Anticipated

Interventions and Outcome Measures

Arms

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.

Primary outcome measure

  • 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 ]

Central Contacts and Locations

Central contacts

Jessica E Shore, PhD

312-818-5731registry@pulmonaryfibrosis.org

Joseph Colbert, BA

734-615-9813pffr-dcc-pm@umich.edu

Locations

Pulmonary Fibrosis Foundation

Recruiting

Chicago, Illinois, United States, 60611

Contacts

Kevin Flaherty, MD

844-825-5733registry@pulmonaryfibrosis.org

Principal Investigator:

Kevin Flaherty, MD

More Information

Sponsor

Pulmonary Fibrosis Foundation

Last update posted

Sep 17, 2026

Last verified

Sep, 2026

Trial information was received from ClinicalTrials.gov and was last updated on 2026-10-25. This information was provided to ClinicalTrials.gov by Pulmonary Fibrosis Foundation on 2026-09-17. Recruitment status is synced daily from ClinicalTrials.gov and may not reflect the sponsor's current status. Confirm during your call.